VOICE OF THE DIABETIC

VOICE OF THE DIABETIC

The Diabetes Action Network of the

National Federation of the Blind

Diabetes Support and Information

Volume 20, Number 3, Summer Edition 2005

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SIMLYN AND BYETTA, AMYLYN'S TWO NEW DIABETES MEDICATIONS, NOW APPROVED

by Ed Bryant

BOTH SIDES OF TRANSPLANTATION

Faith Tootel, NS, RD, CDR, FADA, is a renal dietitian who's had two transplants of her own

PAYING FOR DIABETES

Peter J. Nebergall, PhD, reviews the alternatives to "out of� pocket"

ANOTHER NEW TALKING METER

Introducing England's SensoCard Plus

THE PITFALLS OF POLITICAL CORRECTNESS

Kenneth Jernigan reviews how we talk about the blind

includes front cover color photo of Jenny Dangler; and overprinted on the photo: ��Jenny Dangler: One Mother's Story

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FREE!� FREE!

�� VOICE OF THE DIABETIC is offered absolutely free to any interested person upon request.� Readers may receive the publication in standard print, on audio cassette for the blind, or in both formats.� To begin receiving the VOICE, please complete the subscription form (or a facsimile), found at the end, and mail it to the editorial office.�

�� Please Note:� We have a special bulk-mailing permit that we use to ship the VOICE to you at low cost--it does not allow for free re-mailing.� The Post Office requires you place first class postage on any VOICE you mail to others.��

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�� INSIDE THIS ISSUE

�� CHOLESTEROL: TAKE ACTION SOONER....

�� WALKING WITH THE GIANTS:� REMEMBERING DAISY

�� by Angela Blake, RN, MSN ....

�� NEW FOOT NEUROPATHY TREATMENT....

�� THE PITFALLS OF POLITICAL CORRECTNESS ....

�� NEW NEUROPATHY TREATMENT TRIAL....

�� ONE MOTHER'S STORY

�� by Debra Dangler ....

�� ASK THE DOCTOR

�� by Wesley W. Wilson, MD .....

�� BOTH SIDES OF TRANSPLANTATION

�� by Faith Tootell, NS, RD, CDR, FADA ....

�� SIMLYN AND BYETTA, AMYLIN'S TWO NEW DIABETES MEDICATIONS, NOW APPROVED

�� by Ed Bryant ....

�� IDENTICAL TWINS AND DIABETES ....

�� WORKING WITH YOUR DIABETES TEAM

�� by Ann S. Williams, PhD, RN, CDE....

�� YOU OWE IT TO YOURSELF

�� by Carol Eaton ....

�� LIFESCAN METER PROBLEM....

�� PAYING FOR DIABETES

�� By Peter J. Nebergall, PhD....

�� TO OUR READERS....

�� ANOTHER NEW TALKING METER

�� by Ed Bryant....

�� BOOK REVIEWS

�� by Ruth Mencl, MN, RN, CDE....

�� HEALTHY HOME COOKING

�� by JoAnna M. Lund ....

�� RECIPE CORNER ....

�� WHAT HAPPENED TO THE SUGARTRAC?....

�� NEW TALKING HOUSEHOLD THERMOSTAT....

�� INHALED INSULINS ARE ON THE WAY....

�� DIABETES ACTION NETWORK ARTICLES BOOK� ....

�� THE FACTS ABOUT A1C ....

�� WHY I'M IN THE NATIONAL FEDERATION OF THE BLIND

�� by Gail Bryant .....

�� EDUCATION, EMPOWERMENT, AND THE INSULIN PUMP

�� by Ivy Fung, MS, OTR/L, CDE....

�� THE HEALING VALUE OF FUN

�� by David Spero, RN .......

�� COURTESY RULES OF BLINDNESS....

�� RESOURCE ROUNDUP....

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�� VOICE OF THE DIABETIC, published quarterly, is the national news magazine of the Diabetes Action Network of the National Federation of the Blind.� It is read by those interested in all aspects of blindness and diabetes.� We show diabetics that they have options regardless of the ramifications they may have had.� We have a positive philosophy and know that positive attitudes are contagious.

�� News items, change of address notices, and other magazine correspondence should be sent to:� Ed Bryant, Editor, VOICE OF THE DIABETIC, 1412 I-70 Drive SW, Suite C, Columbia, Missouri 65203; Phone:� (573) 875-8911; Fax:� (573) 875-8902; e-mail: [email protected].

�� Find us on the World Wide Web at:� www.nfb.org and follow the links for "diabetes."

�� Note:� The information and advice contained in Voice of the Diabetic are for educational purposes, and are not intended to take the place of personal instruction provided by your physician, or by your health care team.� Discuss any changes in your treatment with the appropriate health professionals.

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CHOLESTEROL:� TAKE ACTION SOONER

�� We hear a lot about cholesterol.� HDL, LDL, it's confusing; but we know too much cholesterol raises the risk of "cardiac events," like heart attack.� "HDL" is supposed to be the "good" cholesterol, and "LDL" is the bad stuff (remember "l" for low, or "l" for lousy).� If we're wise, we get our blood cholesterol tested regularly; and, if it is elevated, we modify our diet and take appropriate medications (generally the statins), to bring our numbers down.�

�� How far down?� For years we've been told, to be safe, that if we are at "high risk," our LDL cholesterol should run no higher than 100 mg/dl.� Those numbers just changed.

�� The National Heart, Lung, and Blood Institute's National Cholesterol Education Program (NCEP), a US Government-funded research initiative, has just revised its initial (2001) guidelines.� Where the old guidelines recommended a target of 100 mg/dl, and aggressive treatment of LDLs over 130, the new, much lower target is an LDL of 70 mg/dl, with doctors encouraged to prescribe statins for "high-risk" individuals whose LDLs are 100 or more.� Just as with the downward revision of blood glucose targets in the past few years, this change is designed to get corrective action in place sooner, heading off the need for bypass surgery, and further reducing the likelihood of heart attack or stroke.� Bringing the numbers down farther, taking action sooner than before, keeps you in better health.

�� This revision has been very well researched.� Four major studies provided the data:� The Heart Protection Study (20,535 individuals), the PROSPER (Prospective Study of Pravastatin in the Elderly at Risk; 5804 individuals), the ASCOT-LLA (Anglo-Scandinavian Cardiac Outcomes Trial--Lipid-Lowering Arm; 10,305 individuals), and the PROVE IT (Pravastatin or Atorvastatin Evaluation and Infection Trial; 4162 patients).

�� Who needs to be tested for cholesterol?� Everybody age 20 or older, according to the NCEP.� There is a hierarchy of "risk factors," and it is complex and difficult to explain.� The best way to deal is to look at the following list.� The more of these factors apply to you, the more urgent it is for you to get your cholesterol tested, and to take aggressive action to bring your numbers down.� So, what places you at higher risk?

�� If you are obese, diabetic, have a family (or personal) history of heart disease, are a smoker, have high blood pressure, are a male over age 45 or a female over age 55, have low HDL cholesterol, have angina (heart pain), have high triglycerides ("blood fats"), or have had a previous angioplasty or heart bypass, you are at risk for a serious cardiac event.� The more risk factors, the greater the risk.� And heart attacks are very serious business.

�� Get yourself checked.� It's like with your car: "If you can't remember the last time you checked it, you need to check it now."� If your cholesterol is where it should be, great -- one less thing to worry about (and that knowledge can help your blood pressure).� If your LDL cholesterol is elevated, the medications called the statins (Zocor, Lipitor, Lescol, Pravachol, Crestor, Mevachor, and Altocor) can bring it back down far more quickly and safely than can diet alone.

�� What about dietary cholesterol?� High-cholesterol foods are generally high-fat and high-carbohydrate, too, and not really good for your meal plan -- but most of your body's cholesterol doesn't come from what you eat.� Your body manufactures it, in the liver.

�� The statins interfere with the production of new cholesterol in the liver.� Since the body needs a certain amount of the stuff, if the liver is not producing, the body will then get it from the blood -- thus bringing down your blood cholesterol numbers, and decreasing your likelihood of heart attack and stroke.�

�� It's very complicated, and the numbers alone do not tell the whole story.� You need to discuss your cholesterol test results and your risk factors with your doctor.� Take action!��

��

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CORRECTION

�� In Voice Volume 19, No. 3, July 2004, we published an article titled:� "A POTENTIAL FOR TROUBLE:� ERRORS IN REFILLING THE MINIMED 2007 IMPLANTABLE INSULIN PUMP."

�� The article contained a factual error, when it asserted that refilling the pump's insulin reservoir was carried out by the patient.� Medtronic Minimed asserts the 207 pump is designed to be refilled by the doctor only.�

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ADVERTISERS

�� Effective advertising doesn't scream at its audience.� It persuades.� It sells.� The key to cost-effective advertising is making your voice heard where an audience is already listening.� Voice of the Diabetic, circulation 345,214+, offers such an outlet.� Make your voice heard.� For Voice of the Diabetic advertising information, contact:

Eileen Rivera Ley

National Advertising Sales Manager

804 Hatherleigh Rd

Baltimore, MD, 21212

Phone:� (410) 296-7760 * Fax:� (410) 296-7645

e-mail: [email protected]

Web: www.nfb.org/voice.htm

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WALKING WITH THE GIANTS: REMEMBERING DAISY

by Angela� Blake, RN, MSN, Diabetic Educator

Includes photo of Daisy Adaline Parker-Williams.

�� The homework assignment was, simply: �Write about someone you admire. DUE MONDAY!�� The classroom filled with excitement as my sixth grade classmates brainstormed ideas about heroes and "s/heroes" in every field of human endeavor: Frederick Douglass, Harriet Tubman, Martin Luther King and Rosa Parks were just a few names bandied about. The bell rang. As for me, I knew exactly who I would write about -- �mi abuela� -- my grandmother, Daisy Adaline Parker-Williams.�

�� Once upon a time in 1945, the face of diabetes mellitus looked different. It was diagnosed differently, treated differently, talked about ... differently. Adults who were newly-diagnosed with diabetes were placed into a neat, descriptive, cookie-cutter category - �over 30, adult-onset, type 2, non-insulin dependent.�

�� Daisy was the square peg in a round hole. In 1945, at 40 years of age, she was diagnosed with type 1 diabetes mellitus.� The beta cells of her pancreas did not secrete insulin - the hormone that helps the body use glucose for energy.� And so, for the rest of her life, she was relegated to daily injections of the replacement hormone.

�� My opponent nervously shuffled his feet from side to side as my 6^th grade English teacher articulated the word, �fa�� mil�� ial,�� slowly and methodically. This pensive moment was the tiebreaker. I won the class spelling bee that year, hands down. Like the word �ge�� net� ic,� �familial� was a term I knew quite well. I recognized it as a �condition characteristic of some or all members of a family.�� Grandma and her 13 brothers and sisters -� my great uncles, Andrew, Arnette, Henry, Johnson, Lewis, Percy and Peter and great aunts, India, Katie, Libby, Lillian, Naomi and Phyllis were all type 1 diabetics.

�� Unfortunately, none of the Parker historians know whether it was my grandmother�s father, Henry Harrison Parker or her mother, India Luetta Humprey-Parker, or both, who carried the trait. One thing we do know for sure is that before co-discoverers, Frederick Banting, Charles Best, John MacLeod and James Collip isolated insulin in 1921-1922, the prognosis for individuals living with diabetes mellitus was extremely bleak.

�� I was the devout granddaughter who visited the Tar Heel State every summer -- all summer long -- until I was 17 years old.� Of course, no one in Jones County called �diabetes� by its formal name. Informally, we knew it as sugar. You would hear phrases like, �I�ve got a touch of sugar,� �My sugar is up" or "My sugar is acting up,� in conversations. Even now, the elders in the community hold steadfast to the same entrenched belief: �Sugar causes sugar.�

�� I was certainly convinced at the time. It would be many, many years before I could recite the definition of diabetes mellitus: �a chronic metabolic disorder characterized by elevated blood glucose levels due to absolute or relative insufficiencies of insulin.�

�� Adaline was born and bred in the �apartheid� south. Buses, drinking fountains, hospitals, housing, restaurants, restrooms and schools were �separate but equal.� Southern states functioned under strict racial divide.

�� My grandmama hailed from Haw Branch, North Carolina -- home of the Cherokee Nation -- 13,079 tribal members strong! Besides being of African-American ancestry, it was always said, though never confirmed, that she was part Cherokee. Diabetes, like many other disorders, disproportionately affects� members of the� African-American and Native American communities.

�� Daisy Adaline Parker was a college-educated, English teacher who married a simple, God-fearing man -- my grandfather, Leo Vanderbilt Williams.� Thirteen children were born as a result of this union.� The pair lived out their entire, circumscribed lives on the outskirts of rural Trenton, North Carolina.

Healing Beliefs

�� We treated whatever signs and symptoms we had with herbs and

spices that grew on bushes and trees around the house. I can recall seeing my grandparents steep and simmer leaves, roots, and, what looked like twigs in water to either cure or ease certain ailments. Arthritis, colds, gout, hypertension, shingles and, yes, even diabetes was placated with either cayenne pepper, cinnamon, garlic, ginger, parsley, sage, sassafras or thyme - to name a few. Back pain? Sore throat? Muscle aches? A hefty tablespoon of cod liver or castor oil was the mystical, magical cure-all.

�� Quinine was used exclusively by midwives to alleviate labor pains. For the more complicated antidotes, the old �conja� (conjure) woman was consulted. It was rumored she knew how to cast spells and ward off evil spirits. She lived in the back, back, backwoods. On the one occasion we visited her,� I was told to remain in the car.� Culturally speaking, if there was no herbal cure for the ailment and you had to see a doctor, it was a sure sign you were dying.��

�� The local centenarians -- elders over 100 years of age -- had a bit more knowledge about what proportion of herbs cured which conditions.� Granny would demand, �Don�t drink orange juice while you having your cycle (menstrual).� She could never explain why. A lot of the �rationales� had been lost as the remedies transcended the generations. I was 35 years old when I read an article that confirmed orange juice as a natural oxytocin -- it causes the uterus to contract.� One thing a woman does not want during her menstrual cycle is more cramping.� There was scientific validity to what grandma was saying, after all!

�� I am not really sure who diagnosed my grandma with diabetes. Most likely, it was the town doctor.� His office was 13 long country miles away. She saw him once, maybe twice a year.� He was the cardiologist, gynecologist, nephrologist, neurologist, pediatrician, podiatrist and oncologist, all wrapped up into a carbon copy of Colonel Sanders (KFC).� Grandmother would complain all week long about various aches and pains but she would never discuss any major concerns, ask questions or describe symptoms that had cropped up since her last visit. �How ya doin� there, gal?,� he would say while he patted her on the head.� She�d reply, �Oh, mighty fine, doctor. Mighty fine.�

�� I was the �uppity� northerner, determined to advocate on her behalf. When I�d hear something contrary to what I knew to be fact, I�d intervene. �Doctor, that�s not ...� Granny would dart that �look� in my direction. I knew to be quiet. �Don�t dispute

his word. You�se just a child,� she�d tell me when we were alone. A poke, here. A look, there. A question or two, later, and the comprehensive physical �examination� was over. It lasted all of five or ten minutes. Many of grandma�s diabetes-related complications could have been prevented or delayed had her issues been adequately addressed.

�� Twelve of Daisy�s 13 children were delivered at home by �grassroots� midwives.� Good Shepherd Hospital was designated �colored only.�� After the Tuskegee Syphilis Experiment (1932-1972) was exposed, in general, African-Americans did not frequent doctors� offices or hospitals, because they did not trust the medical establishment or its motives. My grandmother�s youngest child, my Aunt Carolyn, was the only Williams sibling born in a hospital. She was delivered vaginally, weighing in at a whopping 13 pounds. Her twin died. Grandma was 40.�

�� Fetal macrosomia� -- macro meaning, �large� and soma meaning �body� -- is the term associated with newborns who weigh more than 4000 grams or 8 pounds, 4 ounces at birth. Excess glucose crosses the placenta -- the organ that nourishes the developing fetus in the uterus -- from the mother.� The fetal pancreas senses the high glucose levels and converts the extra sugar to fat.� The subcutaneous fat is stored on the neonate�s body. Researchers have surmised that macrosomic babies will have abnormal intellect, grow up obese, and develop diabetes. In reality, Aunt Carolyn was a bright, college-educated woman with savvy� business sense.� She was, however, overweight as a teen and grossly obese as an adult. Auntie was diagnosed with type 1 diabetes in her early 40's. The prevalence of �large-bodied� babies can be significantly reduced with tight -- near normal --� maternal blood glucose control.

Diet Management

�� Daisy weighed approximately 230 pounds and stood 5 feet, 5 inches tall. She was 80 pounds overweight, by most height and weight� standards.� Her body mass index (BMI) -- the measure of her weight relative to her height -- tallied as 38.3.� Individuals with a BMI of 30 or greater are considered �obese.� She wore a size 22 dress.

BMI	�� Weight Status
below 18.5	underweight
18.5 - 24.9	normal
25.0 - 29.9	overweight
30.0 and above	obese

�� Source: Centers for Disease Control and Prevention

�� My grandfather owned acres and acres of farmland. My grandparents sowed and harvested a vegetable garden. We ate butternut squash, collard greens, corn, field peas, kale, mustard greens, okra, rutabagas, stringbeans, sweet potatoes and tomatoes, year round. There was a peach, pecan and plum tree in the back yard and an apple and a pear tree in the front yard. IGA, Winn Dixie and Piggly Wiggly - I knew all of the names of the grocery stores in town, but except for buying an occasional�

loaf of bread, we did not frequent supermarkets. Eating out at a diner, a fast-food establishment or a restaurant was, also, very uncommon. We ate, primarily, from the land.

�� Our main meat source was pork. My grandparents raised 200-250 pound pigs for slaughter. We consumed everything from the �rooter to the tooter� -- Pig ears, pig tail, pig tongue, pig feet, pork chops, pork sausage, pork shoulder, ham, hog maws, chitterlings, pork rinds, cracklings, spare ribs, souse, tripe and bacon. If it came from the portly swine, we had eaten it. There wasn�t any part of this slew-footed� mammal that did not get used in some manner. We had no idea the saturated fat content of the "other white meat" could catapult the �bad� cholesterol -- low density lipoprotein (LDL) -- to levels well above the recommended maximum, 100 mg/dL.

�� Editor's Note:� The LDL cholesterol recommended maximum for diabetics has just recently been revised downward, to 70 mg/dl.� The general maximum remains 100 mg/dl.

�� What is LDL (low-density�� lipoprotein) cholesterol?	�� What is HDL (high-density�� lipoprotein) cholesterol?
This type of cholesterol is referred to as �bad� cholesterol. It collects inside the walls of the arteries and can contribute to� the formation of plaque build-up known as �atherosclerosis.�	This type of cholesterol is referred to as �good� cholesterol. It is a type of fat in the blood that helps to remove LDL cholesterol particles from the artery walls and transport them to the liver to be disposed of through the bile, preventing the fatty build up and formation of plaque.
Goal:� 100 mg/dL	Goal:�� 45 mg/dL� (men) �� �55 mg/dL� (women)
LDL levels should be low. To help lower LDL levels, ...	HDL should be as high as possible. To help raise HDL levels, ...
�� avoid foods high in saturated fat, �� dietary cholesterol and excess calories �� increase exercise �� maintain a healthy weight

�� �Source: www.americanheart.org�

�� Chicken was just as popular as pork. This former school teacher could ring a �yardbird�s� neck, chop its head off, de-feather it and have it frying in a �spider� (skillet) before you could say supercalifragilisticexpialidocious!�

��

�� Beef was a rarity. �Coon, deer, fish, possum and rabbit were reserved for special occasions and celebrations. Except for Spam, yes, Spam, we did not eat from cans. �Everything from scratch� was the mantra. Breakfast, lunch and dinner were served with white, long grain, Carolina rice, without fail.

�� Daisy baked biscuits and cakes and fried chicken and fish with lard.� Lard is described as �rendered and clarified white pork fat.� It was sold in jumbo-size, plastic tubs. One tablespoon contains 116 calories, 13 grams of fat and 12 mg of cholesterol.� We used this artery-clogging substance for decades. Saturated fat - the very unhealthy fat -- should be less than 7% -- 10% of total calories. We were maxing out our daily fat intake in one meal. Who knew?

�� We were the sweet potato pie, cake-of-any-kind, Baby Ruth, Butterfinger and peppermint candy� �aficionados.� Every now and then, Grandma would deviate from her -- correction -- our usual, �empty-calorie� vices and help herself to a small bowl of Dolly Madison�s Neapolitan ice cream and a diet Pepsi. I suppose she thought that the diet Pepsi would cancel out the caloric value of the ice cream.�

Exercise

�� Our day began at 5 am when the cocked crowed, and ended at 6 pm, just before dusk.� Everyone had chores to complete.� Granddaddy saw to that.� �Idle hands are the devil�s workshop,� he would reiterate.� The chickens, dogs and pigs had to be fed. The chicken coops and pig troughs had to be cleaned. Leaves raked. Laundry washed. Food cooked. Weeds chopped. Wood chopped. Beds made. House swept. Gardens tended. Vegetables picked. Lawn mowed.

�� My grandfather raised and harvested tobacco. For as far as the eye could see, there were rows and rows of tobacco stalks. The stalks were stripped of their leaves. The leaves were hung on racks to dry and, later, shipped off to market. The task required a great deal of bending, lifting, pulling, shifting, stooping and tying. We got more than the daily, ADA-recommended 30 minutes of moderate activity. These activities were our versions of upper and lower body, low impact aerobics. Exercise can improve glucose tolerance and insulin sensitivity, reduce body weight, increase the �good� cholesterol (HDL -- high density lipoprotein),� strengthen the heart, aid in reducing bone loss, improve mood and aid in relaxation.

Testing

�� The first blood glucose meter -- the Ames Reflectance Meter (Mode1 5541) -- did not surface until 1969. Even after monitors became available without a prescription in 1971, Adaline never, ever owned one. She would test her urine for glucose, once in the morning by using a thin, plastic, padded test strip bought in a canister of fifty (50) from Eckerd�s Drug Store. After she dipped the test strip into her urine sample, the pads changed color -- indicating how much glucose was in the sample. She would compare the resulting color to a chart of colors; each color indicated a level of glucose.� Her results were rarely ever negative.

�� Studies now show urine testing for glucose is not an accurate way to measure how much glucose is in your blood. A sample of urine is often stored in your bladder for several hours before you test it. Glucose does not present itself in urine until it is 180 mg/dL, or greater, in the bloodstream.

Insulin

�� We had tuned out the constant rattle and hum of our secondhand Frigidaire. The rickety refrigerator was too cold in the winter and too hot in the summer. There were no shades of gray. The freezer portion had to be defrosted just about every other day. It was in this refrigerator Granny stored her insulin. I know, now, temperature extremes should be avoided and insulin definitely should not be frozen, because it can cause improper resuspension but back then ... we thawed out many vials.

�� She always insisted her insulin be kept in the Frigidaire. She was never taught that a vial of insulin, in use, did not need to be refrigerated, as long as it was used within 30 days. I recall the cloudy, sterile suspensions of zinc insulin crystals and protamine zinc in buffered water had their own territory in the left rear of the refrigerator. The vials were labeled with a capital �N� -� N for NPH, an intermediate-acting insulin. I uncovered the meaning of the acronym; N stood for neutral, P for protamine and H for Hagedorn, after its discoverer, Hans Christian Hagedorn (1888-1971).

�� Grandmother had smooth, blemish-free skin. Her abdomen, arms, buttocks, legs and thighs were as tough as rawhide. I had to give her injections at a 90-degree angle with added speed and force, otherwise the needle would barely pierce her skin.

�� There was no such thing as �garbage pick-up service� in the country.� We burned all our garbage in a designated spot out in the field. Discarded needles were burned, as well.

Complications

�� It was 1973. I was about 14 years old when my grandmama showed me the infected ulcer. She was in her flower garden, chopping up weeds with a garden hoe, and she had lacerated the underside of her right, great toe. Her sandals were open-toed. First and second rule-of-thumb in foot care, don�t wear sandals or other open-toed shoes and don�t wear shoes without socks! Hindsight, they say, is 20/20.�

�� She was not informed.� Diabetes education was extremely lax. Her family knew even less. Was she checking her feet -- top and bottom -- every day? No. Did she consult her physician about the ulcer? No. It was simply �a cut� to her, and she tried to treat it herself with mercurochrome, a liquid antiseptic and popular

�country cure,� but to no avail. At her son Alphonso�s� urging,� she finally saw a doctor. A year later, there was talk of �gangrene� (tissue death).� High blood glucose levels had, apparently, damaged the blood vessels and nerves in her body. Damage to the blood vessels meant her feet were not getting an adequate supply of blood.

�� People with diabetes mellitus are particularly prone to developing non-healing wounds and are at greater risk of developing complications from those wounds, if they are not properly treated. The skin on her foot was dry and leathery.

Sensation was null. The nerve endings within the skin were destroyed.

�� Upon arrival that next summer, the first thing I noticed was a flesh-colored artificial leg. The prosthesis was propped in a corner. A below-the-knee amputation had been performed. The adults knew. The grandchildren were �spared� the news. I was traumatized. Grandma adjusted remarkably well. She ambulated with a cane. She traveled more than ever. Her children lived in D.C., Wisconsin, Massachusetts and New York. She would purchase a Greyhound bus ticket in a heartbeat and take off for a few months to a year.

�� Five years later, a second, below-the-knee operation was performed, on her left leg -- once again, in New York City. This time, there were complications during her recovery. She was in and out of� consciousness.

�� Her lab values fluctuated from good to bad to worse. Everyone took turns sitting vigil in the hospital. Grandmother�s son, my Uncle Linster, tape recorded the voices of family members at just about every family gathering. Pre- and post-surgical amputation was no different. Every time I want to hear Granny�s voice, I play one of several dozen cassette tapes. I hold the recordings near and dear to my heart, today. Her travels slowed down considerably, because the prosthetic legs irritated her stumps. Her gait was unsteady. She used a cane walker or a wheelchair to ambulate.� She was a lot more sedentary, and, as a result, she gained weight.

�� I was about 21 when my grandmama�s eyesight began to fail. She was an avid quilter and milliner -- she sold and made hats. When she wasn�t gardening, she was quilting. When she wasn�t quilting, she was making hats. When she wasn�t making hats, she was gardening. What would� she do without her sight? She was happiest when she was engaged in these activities. My heart bled.

�� The ophthalmologist prescribed a new set of lenses for her. I am almost certain the eye exam wasn�t dilated. A dilated eye exam should be performed at least yearly. Her lenses were three times thicker than the ones she wore the year before. Her vision was 20/200 with correction. She was -- in medical terms -- �legally blind.� We knew the layman�s term, �eye disease.� Her diagnosis was, actually, �retinopathy� --� retino, in reference to the �retina� and pathy, loosely translated as �suffering.� This condition is a disease of the small blood vessels in the retina -- nerve elements in the back portion of the eye that receive images from the outside world. Retinopathy occurs in individuals with prolonged, poorly controlled, diabetes.

�� With her new prescription, she sat down to her foot-propelled sewing machine in an attempt to create another one of her masterpieces. By this time, I had taken up permanent residency in North Carolina.� I was a senior in nursing school. My focus was on demanding, clinical rotations and graduation. Besides a �touch of sugar,� she had a �touch of arthritis,� also. Her dexterity and fine motor skills -- muscle control required to make small, precise movements -- were uncoordinated. It was a challenge for her to thread a needle. I had constant guilt-pangs because I couldn�t assist her with her projects. I suppose she thought I had no interest in what she was doing and how she was doing it, but I made several mental notes.� Today, quilting is my favorite pastime. I haven�t tackled the hat projects, but I have all her millinery notes when I decide to.��

Spirituality

�� On Sunday, we praised God. �Remember the Sabbath day, to keep it holy,� Daisy insisted. And we did. It was one of the few things she was adamant about. I was not allowed to cook, sew, watch TV or listen to the radio on Sunday. These activities were considered �work.� Dancing was a �sin,� any and everyday of the week. We fellowshipped at Oakey Grove Missionary Baptist Church and ate dinner that had been prepared on Saturday. My grandfather told stories -- some real, some imagined -- and we went to bed. I attribute my grandma�s positive outlook on life, her giving spirit and her longevity to her faith and belief in a higher Power. She walked by faith, not by sight.

Epilogue��

�� Only two of my grandmother�s siblings, my great aunts, Naomi, 94, and Phyllis, 94, are still alive. Nine of her 13 children are deceased. Five of the 13 inherited diabetes. Most of her grandchildren, great-grandchildren and great great-grandchildren are pre-diabetic -- diagnosed with fasting blood glucose levels between 100-125 mg/dL -- or are already affected by the chronic, metabolic disease.

�� When I started nursing school, I began to identify points-in-time -- past and present -- when things went awry for my grandmother in her diabetes care and management. I harbored a lot of �If Only� thoughts.� However she did the best she could, at the time, with the resources and information she had available to her. She lived a meaningful life with purpose.

�� Daisy Adaline Parker-Williams shared her January 17^th birthday with statesman and scientist Benjamin Franklin;� stage, film, and TV actor James Earl Jones; heavy weight boxing champions Muhammad Ali and Joe Frazier (diabetic); and her neighbor and childhood friend, Catherine Hill. Like these towering personalities, Granny had a firm grip on what it was she wished to accomplish, at any given time, and forged

ahead in spite of any foreseen or unforeseen difficulties.

�� Grandmama would, periodically, preface and end her sentences with, �If it�s God�s will.� On January 9, 1986, it was God�s will that my friend, my mentor and confidant, who had lived through 15 presidencies, depart this earthly life. She was 81 years young.

�� My English teacher took a few points off, here and there, for punctuation and sentence structure.� �Very Good� was splashed across my paper in bright, red ink. She hung my report up on our class bulletin board along with my grandma�s black and white photograph. She titled the board, �Walk with the Giants.� She placed, Daisy Adaline Parker- Williams (1905-1986) squarely, between mathematician and scientist, Benjamin Banneker (1731-1806) and newspaper editor and journalist, Ida B. Wells-Barnett (1862-1931).

�� Love you, grandma. Always.

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�� If you or a friend would like to remember the Diabetes Action Network of the National Federation of the Blind in your will, you can do so by employing the following language:

�� "I give, devise, and bequeath unto the Diabetics Action Network of the National Federation of the Blind, 1800 Johnson Street, Baltimore, Maryland 21230, a District of Columbia nonprofit corporation, the sum of $_______________" (or "_______________ percent of my net estate" or "the following stocks and bonds:____________________") to be used for its worthy purposes on behalf of blind persons."

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NEW FOOT NEUROPATHY TREATMENT

�� Many of us are familiar with diabetic neuropathy, the burning, itching and numbness that most often manifest in the feet.� We know neuropathy develops when sugars are high, and we know the best way to avoid it is to keep our blood sugars down, as close to the non-diabetic "normal" as we can get.

�� But how do we treat it?� Now there's a new approach.� Remember "carpal tunnel?"� That neuropathy-like condition affects the hands of secretaries and assembly line workers, and can be alleviated by reducing pressure on swollen nerves, often by a simple surgery.� What about the feet?

�� Dr. Kent DiNucci, DPM, FACFAS, a Chicago area foot and ankle surgeon, recently suggested that some nerves in the feet pass through tarsal tunnels, similar to the carpal tunnels of the hands.� Diabetes, with its elevated blood sugars, can cause nerves in the lower extremities to enlarge, from water build-up that follows the high blood glucose.� As the nerves enlarge, they are increasingly squeezed by the tarsal tunnels, causing pain, interrupting blood flow, and, eventually leading to nerve deterioration.

�� Some of the symptoms we traditionally label as "from neuropathy," may in fact be results of this nerve compression, rather than from direct degeneration of the nerve trunk due to glycosylation of high blood glucose.� Instead of just treating the pain, what about attacking the nerve compression, directly?

�� Dr. DiNucci's idea is to treat this "tarsal tunnel" condition as other surgeons have treated carpal tunnel, surgically "releasing" the tarsal tunnel and allowing the swollen, constricted nerve to decompress, thus allowing it to regain circulation and regenerate.�

�� "For the best outcomes," Dr. DiNucci states, "diabetic patients should be evaluated as soon as they feel tingling or burning in their toes, well before extensive nerve damage occurs.� This procedure isn't a cure for diabetic neuropathy, but it can delay eventual nerve degeneration."

�� Our thanks to ACFAS NEWS, published by the American College of Foot and Ankle Surgeons, for the above information.� For more information, see the ACFAS website:� www.footphysician.com��

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THE PITFALLS OF POLITICAL CORRECTNESS

includes photo of Kenneth Jernigan

�� From the Voice Editor:� This article appeared in the BRAILLE MONITOR, August 1993, published by the National Federation of the Blind.� It remains as valid today.� Kenneth Jernigan served as president of the National Federation of the Blind for many years, where his dynamic leadership and outstanding personal example helped the Federation grow.� His writing still inspires.��

�� As civilizations decline, they become increasingly concerned with form over substance, particularly with respect to language.� At the time of the First World War we called it shell shock--a simple term, two one-syllable words, clear and descriptive.� A generation later, after the Second World War had come and gone, we called it combat fatigue.� It meant the same thing, and there were still just two words--but the two syllables had grown to four.� Today the two words have doubled, and the original pair of syllables have mushroomed to eight. It even has an acronym, PTSD--post traumatic stress disorder.� It still means the same thing, and it still hurts as much or as little, but it is more in tune with current effete sensibilities.

�� It is also a perfect example of the pretentious euphemisms that characterize almost everything we do and say.� Euphemisms and the Politically Correct language which they exemplify are sometimes only prissy, sometimes ridiculous, and sometimes tiresome.� Often, however, they are more than that.� At their worst they obscure clear thinking and damage the very people and causes they claim to benefit.

�� The blind have had trouble with euphemisms for as long as anybody can remember, and late twentieth-century America is no exception.� The form has changed (in fact, everything is very "Politically Correct"), but the old notions of inferiority and second-class status still remain.� The euphemisms and the Political Correctness don't help.� If anything, they make matters worse since they claim modern thought and "new enlightenment."� Here is a recent example from the Federal government:

United States Department of Education

Washington, D.C.

May 4, 1993

Memorandum

____________________

�� That is what the memorandum says, and if it were an isolated instance, we could shrug it off and forget it.� But it isn't.� It is more and more the standard thinking, and anybody who objects is subject to sanction.

�� Well, we of the National Federation of the Blind do object, and we are doing something about it.� At our recent national convention in Dallas, we passed a resolution on the subject, and we plan to distribute it throughout the country and press for action on it. Here it is:

Resolution 93-01

�� WHEREAS, the word blind accurately and clearly describes the condition of being unable to see, as well as the condition of having such limited eyesight that alternative techniques are required to do efficiently the ordinary tasks of daily living that are performed visually by those having good eyesight; and

�� WHEREAS, there is increasing pressure in certain circles to use a variety of euphemisms in referring to blindness or blind persons--euphemisms such as hard of seeing, visually challenged, sightless, visually impaired, people with blindness, people who are blind, and the like; and

�� WHEREAS, a differentiation must be made among these euphemisms: some (such as hard of seeing, visually challenged, and people with blindness) being totally unacceptable and deserving only ridicule because of their strained and ludicrous attempt to avoid such straightforward, respectable words as blindness, blind, the blind, blind person, or blind persons; others (such as visually impaired, and visually limited) being undesirable when used to avoid the word blind, and acceptable only to the extent that they are reasonably employed to distinguish between those having a certain amount of eyesight and those having none; still others (such as sightless) being awkward and serving no useful purpose; and still others (such as people who are blind or persons who are blind) being harmless and not objectionable when used in occasional and ordinary speech but being totally unacceptable and pernicious when used as a form of Political Correctness to imply that the word person must invariably precede the word blind to emphasize the fact that a blind person is first and foremost a person; and

�� WHEREAS, this euphemism concerning people or persons who are blind--when used in its recent trendy, Politically Correct form -- does the exact opposite of what it purports to do, since it is overly defensive, implies shame instead of true equality, and portrays the blind as touchy and belligerent; and

�� WHEREAS, just as an intelligent person is willing to be so designated and does not insist upon being called a person who is intelligent and a group of bankers are happy to be called bankers and have no concern that they be referred to as persons who are in the banking business, so it is with the blind--the only difference being that some people (blind and sighted alike) continue to cling to the outmoded notion that blindness (along with everything associated with it) connotes inferiority and lack of status; now, therefore,

�� BE IT RESOLVED by the National Federation of the Blind in convention assembled in the city of Dallas, Texas, this 9th day of July, 1993, that the following statement of policy be adopted:

�� "We believe that it is respectable to be blind, and although we have no particular pride in the fact of our blindness, neither do we have any shame in it.� To the extent that euphemisms are used to convey any other concept or image, we deplore such use.� We can make our own way in the world on equal terms with others, and we intend to do it."

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NEW NEUROPATHY TREATMENT TRIAL

�� Announcing the world's first clinical trial to evaluate the safety and impact of VEGF (Vascular Endothelial Growth Factor) gene transfer to treat diabetic neuropathy.� According to the Neuropathy Association, 20 million Americans suffer from various forms of neuropathy, and diabetes is the most common cause of this serious condition.

�� The trial is being led by Allan Ropper, MD, chief of Neurology for Caritas St. Elizabeth's Medical Center in Boston, MA.� Dr. Ropper is a world-renowned expert in neurology.� He has co-authored the most widely sold neurology textbook in the world, leads one of the world's most respected Alzheimer/Parkinson's disease research institutes, and chairs the neurology department for Tufts New England Medical Center, where he's responsible for

the curriculum of five Boston-area teaching hospitals.� Dr. Ropper has treated patients from as far away as Bali, New Delhi, the Netherlands, and England, and celebrities such as Michael J. Fox and Ozzy Osbourne.

�� Dr. Ropper is currently recruiting volunteers for this trial.� Volunteers who are interested can call 1-888-311-4363 for more information on the trial and the enrollment procedures.� They should tell the operator they would like details on the gene transfer research to treat diabetic neuropathy.

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ONE MOTHER'S STORY

by Debra Dangler

June� 14, 2004:

�� Jennifer, my three-year-old daughter, is waiting in a public health clinic with me, her mom, in Phoenix, Arizona.� We want to know why a rash on her bottom won't go away.�

�� Jennifer and I have just moved down from Northern Arizona,� where the weather is cool, to Phoenix, where it is very hot.� We've been here for a few weeks, and I am very� pleased with the large amount of water Jennifer is drinking.� Jenny is very thirsty, I think she is dehydrated from the extreme heat.� We bought a 32-oz. cup and lid to keep full of water; but no matter how many times she drinks all the water, she is still thirsty.� Jenny is not retaining any water, and is going potty every half hour.� She is very tired, and does not want to play.� Jenny says her legs hurt and her belly hurts.�

�� When the doctor finally sees us, the rash is examined and we are sent away with advice to use anti-fungal creme on the rash.� I spoke to a pharmacist, who told me there were no studies of use of anti-fungal preparations on a girl's bottom, so there may or may not be adverse reactions and to be cautious of "internal application." Red flags went up, I called my sister, and she agreed I had received suspicious advice.� I needed a second opinion.

�� It's� early� evening� now, and Jenny and I go to the emergency room for our second opinion.� We are waiting patiently, but Jenny and I have eaten almost one of everything from the candy, chip, and soda machines.� We've been here all night, and it is now morning, June 15, 2004.� Jenny has been going potty every 15 minutes, all night long, and I am grateful I bought several pairs of clean changes for her.��

�� The doctor finally calls us into an exam room.� We talk about the rash, and the health clinic.� The doctor asks if she has been using the restroom a lot?� I said, "yes," and we are sent to the restroom for a 'catch' (urine sample).� This did not take long, and the results came back quickly.� Jenny has sugar and ketones in her urine.� I try to ask what this means, but the doctor is hurriedly scampering about and says we need a blood sample.� The lab workers are there in a flash, and the results almost� immediate.� Once again the doctor is swirling about, assistants are rushing in, and machinery is getting hooked up.�

�� The doctor hands me a clipboard with a release form on it, and as he is still preoccupied with his rushing about, manages to� get out the words, "Needs to be treated for diabetes."

�� Faster than I can understand what all this means, I am helping to hold her down for an IV.� There was much screaming and crying, and I hoped the worst was over.� Little did I know. ��

�� We were not going home, and Jennifer was scared stiff and crying.� As I choked on fear, trying to appear calm and brave for my daughter, I knew something was horribly wrong.� I had heard about� diabetes, how it could be controlled� by taking� pills and not eating sugar.� What I did not understand was why the ambulance was picking us up for a trip to the children's hospital.�

�� When the ambulance arrived, the techs put Jenny into a car seat, and then belted it to a gurney.� Jenny's eyes and� arms were grasping for me as she cried out fearfully "Mommy!! Mommy?? I want to go home."

�� I wanted to take her into my arms and run away.� I tried to console her; I held her as close as I could amidst all the belts,� buckles, boards, and tubes.� I was told I could only ride with her if there was enough room.� I would have� battled� 1,000� armies to be by her side.�

�� The ambulance tech took my hand, and helped me get into the ambulance.� The ride was long, and the tech and I spoke as Jenny drifted off to sleep.� I was reassured that we were going to a wonderful hospital specially designed for children.� The tech took the time to help ease my fear, and I started to feel like we were on a healing journey, rather than on a trip to the dungeon.

�� We arrive at the children's hospital.� We are greeted by smiling faces, and there is a bed ready for Jennifer.� We are taken to her room and Jenny is made comfortable.� She is given color books and Barbie dolls.� Introductions are made, and there are explanations that more blood work needs to be done to verify whether or not diabetes is the culprit.� I am told the IV vein is still in place well enough to get a blood draw straight from the IV, and no more poking will be necessary for the time being.�

�� Shortly after, an endocrinologist visits us, and orders an insulin drip for Jenny's high blood sugar.� An antibiotic drip is also ordered, because the rash on Jenny's bottom is a skin infection caused from all the sugar in her urine.� The rash has eaten away at her skin, and is beginning to bleed.�

�� We are advised that Jenny will be in the hospital for three days; did I need accommodations?� I asked for a sleeping chair� to be put next to Jenny's bed.� I was made welcome.

�� We are awakened each morning for blood tests, to chart the sugars in Jennifer's blood.� It's clear, Jenny has juvenile diabetes.� For the three days we are there, we are schooled, trained, and educated about juvenile diabetes.

�� Now I understand how lucky we are to be able to treat and control diabetes.� I have a profound thankfulness for the two gentlemen who discovered insulin, as it is through their discovery we are able to save the life of my precious girl and so many others afflicted with diabetes.

�� Until now I knew not the full seriousness of diabetes. Diabetes care has been complicated and all-consuming, emotionally and financially.� I am eternally grateful for the many good people who head up the support crews that make 'reaching out' possible. To the volunteers who have spent endless hours 'reaching out,' I thank you all. It helps to know that we are not alone, even if leagues of vast space may separate us. Through papers such as "the Voice" and good people such as Mr. Bryant, we are laid down a 'bridge' over 'troubled waters.' This bridge is far stretching and I am thankful to be allowed to distribute a few rungs of this bridge into my neighborhood. Good wishes to all of you.

�� Debra and Jennifer

��

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ASK THE DOCTOR

by Wesley W. Wilson, MD

includes art, medical caduceus

�� NOTE:� If you have any questions for "Ask the Doctor," please send them to the Voice editorial office.� The only questions Dr. Wilson will be able to answer are the ones used in this column.

�� Wesley W. Wilson, MD, has retired as an Internal Medicine practitioner at the Western Montana Clinic in Missoula, Montana.� Dr. Wilson was diagnosed with type 1 diabetes in 1956, during his second year of medical school.� He remains interested and involved in diabetes education for patients and professionals.

Q:� A lot of people in my family have diabetes -- but I don't.� I know I'm at higher statistical risk -- but what about my son?� Since his mother (me) doesn't have it, is he at higher risk of developing diabetes?

A:� All members of your family are at significantly higher risk of developing diabetes.� I can't give you an exact answer (there are lots of statistics), but would rather leave it general and just warn that both you and your son are more likely to develop diabetes than a person who has no history of diabetes in the family.�

�� Since the risk is increased, and you know it, now is the time to do everything possible to reduce the risk of developing diabetes.� You and your son should be maintaining an ideal weight (your doctor can help you establish just what this should be) and should be getting daily regular exercise.� A very large study in England showed that even persons who were already overweight, and had slightly elevated� blood sugars, were able to reduce their risk of developing diabetes -- if they achieved a very modest weight loss coupled with mild exercise such as one half-hour of� walking every day.�

�� It's hard to think of harmful side effects from such a program and there are very big benefits from avoiding diabetes or even delaying the onset of diabetes.� It seems to me that it's much better to do the things that can avoid diabetes than to worry about what might develop.�

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BOTH SIDES OF TRANSPLANTATION

by Faith Tootell, NS, RD, CDR, FADA

�� From the Editor:� Faith Tootell is a renal dietitian.� She works at a dialysis unit, so she knows about organ transplants, professionally.� She's also had two of them herself, a kidney and a pancreas, so her knowledge is personal as well.� Here's what she has to say:�

�� I have had two organ transplants.� Both of them work.� I had a kidney transplant in September 1984, and my pancreas transplant in September 2000; so far they�ve both done well.

�� I�m 49, and very proud of it.� I feel like every year I have a birthday it�s an accomplishment.� It�s kind of funny to watch my friends be so ashamed of getting older.� To me, it�s some sort of prize.� I feel blessed to still be alive.�

�� I was born in New York, but I spent most of my life, except for a couple years in New York and St. Louis, Missouri, in the Bay area, San Francisco, and that�s where I live now.

�� I�ve always been a very active, independent person, and I was the middle child of a big Irish family, with some very complicated dynamics in our family.� My oldest sister was also a type 1 diabetic and was very, very brittle throughout her life.� A lot of new discoveries and announcements about diabetes care were happening, but she really wasn�t able to take advantage of them.� I think she died before home glucose meters were available and so really didn�t ever get to take advantage of the new technology.�

�� I was diagnosed at the age of about seven and a half, and I was diabetic until I was 45 or so.� Thirty eight years -- and I can almost remember every single minute.� By most doctors' definitions I would probably have been considered a "brittle juvenile diabetic," but I would never have described myself that way.� I was not in and out of the hospital all the time.� I was not going into convulsions, or diabetic coma, or anything like that, but certainly, I had blood sugar jumps all over the place.

�� To tell you the truth, I think it�s funny to look back on it now.� I thought I was "normal," then, but now, having real normal blood sugar I can see that I wasn't.

�� I was about 20 years old when my sister died, and about seven years after she died, my kidneys first failed.� I had to start dialysis at age 27.� My mother had just been diagnosed with end stage lung cancer, and I just didn�t want to be spending the rest of my life on a dialysis machine.� Also, I was working full time.� I didn�t stop working, and in those days I dialyzed at Satellite Dialysis, the company for which I now work.� They had a proactive sort of philosophy, because not many people were on dialysis in those days.� It was reasonably new, and "self-care" was their approach to the patient.�

�� In order to do dialysis in their facility, you had to be able to set up your own machine, take your own vitals, and almost be able to cannulate yourself, but I did everything else.� The idea was to take a more active role in one's own care.� That sort of thinking inspired me to think outside the box and just say, �This is not all there is to my life.� It is something I have to do to stay alive.�

�� I didn�t want my diabetes, or my kidney failure, to define who I was.� I wanted it to be part of what I had to do on a daily basis, not be the sum total of who I was.� I felt the same way about my kidney disease.� Also, back to the sort of Irish family complicated dynamic, my older sister, sandwiched between the two diabetics, very much wanted to donate a kidney to me, and was a perfect match.� And in those days, which seems inconceivable now, as you may know, the waiting list was 6 months, not 6 years, like it is now in California.� I was going to just go on the cadaver list, but she really wanted to give it to me, and she was a perfect match, so I ended up waiting two years for her kidney, when I could have had one in 6 months on the waiting list.� I dialysed for a year and nine months.� Then I got my kidney.

�� My quality of life is tremendously improved now, since I have my transplants.� Sometimes I get up and don�t always feel good from the myriad transplant medications I�m forced to take to maintain the security of the transplants, but it is a vast improvement over the cognitive fog I used to wake up in from my diabetes.� I think that's so important, to dispel that fog.�

�� I�m a renal dietitian at a dialysis unit, at Satellite Health Care, in San Jose, California.� The dialysis unit is one division.� One thing I try to do with the doctors there is help dispel the myths about diabetes control.� You look at a diabetic�s bad blood sugar test results, and immediately everybody wants to start pointing fingers at them, saying, �What did you do?� �What did you eat?� �Where did you go wrong?�� I know, from my past, I could literally exercise the exact same amount, eat the exact same things, do it all at the exact same time and one week wake up with a blood sugar of 344 and the next week wake up with a blood sugar of 44.� It had a lot to do with what was going on with my menstrual cycle, what was going on in my week in terms of demands of my time and energy and emotional level and everything else.�

�� Diabetes is a very complicated disease; there are a lot of factors to keep under control.� Some people find it very difficult.� The propaganda that you can really control this easily and well is dangerous.� Really good self-management is a lot of work, and you're not going to get "perfection."� You can improve your control, by trying, by watching everything, by metering often, using an insulin pump, choosing more appropriate insulins/medications -- whatever works for you as an individual.�� Then you'll do better, but I think you're really setting people up for failure to make them think that they�re always going to walk around with a perfect blood sugar of 104.

�� When I was about forty years old, I started experiencing really bad chest pains.� Those can be common side effects of transplants, especially in diabetics, so I was given exercise stress tests, several times, echocardiograms and the whole thing.� The doctors didn�t want to cath me (give me an angiogram, with dye) because of my kidney.� The dye can jeopardize your kidney, so they preferred to avoid that critical test -- and I continued having symptoms of frequent chest pains, but I kept passing the stress echos.� This went on for three years.�

�� Finally, I ended up in the E.R. one night at about a quarter until three.� Every single one of my arteries had blockage in it, and then I had a major blockage in my aorta right above my transplanted kidney, so it was amazing I had not lost the kidney.� I needed quadruple coronary bypass surgery to return to health.

�� Transplant centers, that had previously been courting me for a possible pancreas, lost interest in me, then.� As soon as I had gotten the bypass, they weren�t interested in me anymore.�� Once you have complications, many don�t want to take the risk on you. �Once you really need the pancreas, they don�t really want to give it to you.� (Editor's Note:� It's called "cherry-picking," this choosing only the healthiest candidates, and it is done to make a given center's success rate look as good as possible.� Not all centers engage in this questionable practice.)

�� I went for the pancreas, because I had to.� In September, 2000, I went to see Dr. David Sutherland at the University of Minnesota Transplant center, in Minneapolis.� I fully expected to have to beg for my life.� I think I was there for less than ten seconds when he looked at me and said, �What took you so long to get here?�� It was the first notion I had ever had that I might actually see a day in my lifetime when I wasn�t diabetic, and I just burst into tears.� I tried to say, �I�m sorry, Dr. Sutherland.� I�m not usually this emotional,� but I just couldn�t.� It was so hard for me to believe.

�� Once you get kidney disease, it�s another complication.� You�re never exactly the same as before you were.� So a� transplant is a way to treat it, but it's not a "cure"; you�re still considered a stage 5 kidney disease patient.� The transplant should be thought of as "renal replacement therapy."� By the way, Medicare now covers pancreas transplantation; it is no longer classified as 'experimental."

�� Living with a transplant is never the same as before your kidney failed.� The immunosuppressive medications you must take forever are not kind, and can have very severe side effects.�� The ones I�m very concerned about, because I�ve seen it happen to my patients, more than it has happened to me, are adult diabetics who have received their transplants, been put on Neoral and Prograf, and had blood sugars that have climbed into the seven hundreds.� Some of these folks lost their eyesight the second they got their kidney transplant.�

�� The kidney/pancreas transplant is not appropriate for every insulin-using diabetic.� I would just caution anyone who is on dialysis and is a diabetic against thinking all your problems are over if you�ve got a pancreas and a kidney.� You trade them in for a new set of problems that are easier to manage and that�s the thing.� It�s important that you always manage them.� I�ve never once in twenty years missed a dose of my immunosuppressant� medications.� It doesn�t matter how sick I was, even if I was throwing up.� You have to take them.

�� My dialysis unit has several people who didn�t agree.� If they were feeling well, they didn�t think they needed their medications anymore.� They sort of took it upon themselves to practice medicine.� Now they are back on dialysis.

�� I work with some patients who really want a transplant, but when the centers call and ask me, �Do you think this person is a good risk?� I actually, honestly have to answer: �No, I don�t.�� I hate to do this to people, but these are the folks who never take a single pill; they don�t participate in their own care whatsoever.� They don�t even want to listen, when I try to make recommendations about how to be healthier -- and they�ve already lost a kidney, in part, because they didn�t take their medications.� They've shown me they won't work to keep a transplanted kidney, and� I think such people are a bad risk.� A donated kidney is a precious resource.

�� There�s a lot of good information out there for you, many good websites to go to, like www.diabetesinstitute.org, which is Dr. David Sutherland�s website.� Www.kidney.org is the website of the National Kidney Foundation and I�ve noticed Voice of the Diabetic has some website resources available for people as well (go to: www.nfb.org/voice.htm for the Voice on the Web.)��

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SIMLYN AND BYETTA,� AMYLIN'S TWO NEW DIABETES MEDICATIONS,� NOW APPROVED

by Ed Bryant

�� For decades, diabetes researchers thought type 1 diabetes was simply about lack of insulin.� Their model of euglycemia, normal blood glucose, was a balancing act between two hormones, insulin and glucagon.� All diabetes medication either stimulated, replaced, or augmented the action of one of these two, and that there might be another hormone at work, a third piece of the puzzle, was not considered.

�� We have another missing piece, now.� Amylin Pharmaceuticals, Inc., a San Diego, California based company, has been researching the human hormone amylin, and their findings are fascinating.� Their product, pramlintide (trade name Simlyn), was approved by the FDA on March 16, 2005.

�� Amyloid, the parent compound, was first noted about a century ago, by pathologists performing autopsies; it occurred in the pancreas.� In the 1980s, the chemical was analyzed, and the peptide amylin sequenced from it.� Because naturally-occurring human amylin is too thick and viscous to inject, Amylin Pharmaceuticals developed its injectable analog, pramlintide (Simlyn).

�� These two hormones are both produced in the Beta cells of the human pancreas.� A type 1 diabetic, deficient in insulin, is equally deficient in amylin.� A type 2 diabetic may exhibit a lesser amylin deficit.� But what does amylin do?

�� Amylin appears to have a moderating effect on blood glucose absorption, from the gut into the blood.� It acts as a set of brakes, slowing and managing meal-derived glucose inflow, controlling pancreatic glucagon secretion, and thus regulating hepatic (liver) glucose production.� It smooths the "peaks and valleys" of blood sugar fluctuation, improving overall glycemic control.

�� In studies where Hemoglobin A1c test results were compared between those who used both insulin and Simlyn, and those who used only insulin, the A1c test results of those who used the injectable amylin analog were significantly lower than those who did not.

�� Clinical trials also revealed that most overweight diabetics who received Simlyn lost weight, while most lean diabetics, given the same medications, did not lose weight.� Although the mechanism that produced these pleasant, unexpected findings is not yet clear, I find it exciting, as achieving and maintaining ideal weight contributes to good health, a sense of well-being, and for some, a reduction in the amount of insulin needed to maintain good control.�

�� At this time, Simlyn use is by injection, and the medication is not drawn up with insulin.� Simlyn users take an extra injection.� This requires motivation.�

�� Many diabetics have experienced episodes of severe hypoglycemia, dangerously low blood sugars.� "Tight control," multiple-test, multiple-injection therapy to keep the blood sugars as close to a non-diabetic "normal" as possible, cuts risk of diabetes complications, but increases the risk of "hypos" -- and by extension, medications that improve tight control (like Simlyn) can increase the risk of running too low.� The FDA approved Simlyn for all insulin-using diabetics (type 1 or insulin-using type 2) who cannot achieve consistent euglycemia with insulin alone.� People whose diabetes is "brittle" in spite of their best efforts should ask their doctors to consider Simlyn.� As with many medications, I expect the prescribing instructions to be widened somewhat, as doctors learn more about the medication.� Right now, what matters is that insulin users have a new tool to help them control their blood sugars.�

�� Lightning rarely strikes twice in the same place -- but it just did.� Almost bled white in the long wait for FDA approval of Simlyn, Amylin has just had its second breakthrough FDA approval, April 29, 2005, just weeks after the first.

�� For several years, Amylin researchers, in partnership with Eli Lilly and Company, have been studying Extendin-4, a manufactured analog of the human hormone glucagon-like-peptide (GLP-1).� In these "AMIGO" studies (Access diabetes Management for Improving� Glucose Outcomes), reviewed in the journal Diabetes Care, the drug showed promise.� Now it is here, and will be sold under the trade name Byetta.

�� Intended for type 2 diabetics who are using a sulfonylurea, metformin, or both, and who are not achieving adequate glucose control, Byetta is administered by injection.� The drug is described as "adjunctive therapy" (i.e. It supplements, it does not replace, your established sulfonylurea and/or metformin therapy).� Byetta is not a substitute for insulin in insulin-requiring patients ("maxed-out" type 2s) and should not be used for treatment of type 1 diabetes.� Other cautions include a warning not to use where end stage renal disease or severe renal impairment are present.�

�� Outside the USA, Lilly will handle distribution.� Within the United States, the companies will co-promote the product.� Lilly is expected to file shortly for regulatory approval to market Byetta in Brazil and Mexico, and to file for European regulatory approval in 2006.

�� Stay tuned, and talk to your doctor about these new medications.

�� Amylin Pharmaceuticals� website: www.amylin.com

��

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IDENTICAL TWINS AND DIABETES

�� There are possible genetic components to type 1 diabetes, and we don't know what they are.� There are possible environmental components, too; questions about where type 1 diabetes comes from.� We need answers.� Maybe you can help?�

�� The University of Minnesota is conducting a study of identical twins and diabetes.� They are looking for 20 pairs of identical twins, at least ten years of age, in which one twin has type 1 and the other does not.� If you fit this profile, you could help the researchers separate out the genetic (identical twins have the same genetic material) from the environmental (we never have exactly the same exposures and experiences).� What is the difference between the one twin who develops the condition, and the other, who does not?

�� Why does this matter?� We cannot truly cure a medical condition until we know what causes it -- and we don't know what causes, what launches, type 1 diabetes.� The Twins Study might reveal that the genetic material between affected and un-affected twins is identical -- in which case the cause of type 1 would have to be environmental.� It could, on the other hand, show us a mutation, some sort of unexpected and unpredictable genetic modification -- one that we've missed up to now.� Either way, the study will bring us closer to a cure for type 1 diabetes.

�� If you want to be part of the Twins Study, and are a twin with type 1 diabetes, whose twin is diabetes-free (or vice versa), contact the researchers by telephone: 1-800-688-5252, extension 44688, local telephone: (612) 624-4688, or by e-mail: [email protected]� You could be the one who makes the difference.

�� 

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WORKING WITH YOUR DIABETES TEAM

by Ann S. Williams, PhD, RN, CDE

�� Managing your diabetes is a team effort.� There are many professionals who could be involved, depending on your particular needs.� This column will explain which professional could be involved, which should be in your core diabetes team, and when you might want to involve some of the other professionals.

�� Your diabetes management team can consist of any or all of the following people:�

* A primary care provider (doctor or nurse practitioner)

* An endocrinologist (specialist in diseases of the glands, including diabetes)

* A nurse diabetes educator

* A dietitian

* A dentist

* An eye specialist (ophthalmologist or optometrist)

* A pharmacist

* A mental health professional

* A cardiologist (heart specialist)

* An exercise physiologist

* A nephrologist (kidney specialist)

* A neurologist

* A podiatrist (foot doctor)

* A vision rehabilitation therapist

* Finally, the most important person on your health care team is YOU!

�� Your core diabetes team should include at least you, a physician, a nurse diabetes educator, a dietitian, an ophthalmologist or optometrist, and a dentist.� If you see a specialist, such as an endocrinologist, for your diabetes care, you should have both an endocrinologist and a primary care provider.� If you use diabetes medications, you should also have a pharmacist.

�� Your primary care provider is responsible for your general medical care. This person would be responsible for doing an annual physical examination, taking care of any medical problems that are not specifically covered by a specialist, and referring you to other health care providers when you need them.� Many health insurance plans require that each covered person has a primary care provider, and that the primary care makes all referrals to other health care professionals.� Usually primary care providers for adults are doctors specializing in either internal medicine or family practice, or nurse practitioners.� Sometimes, for people who have a specific medical problem, a specialist agrees to be a person's primary care doctor.

�� Many people with uncomplicated type 2 diabetes receive excellent care for their diabetes from a primary care provider who has received recent continuing education in diabetes care.� If your diabetes is simple to manage, if you are meeting all your diabetes care goals, and you have a diabetes care plan you can live with, then you might decide it's best for you to work with your primary care provider for your diabetes care.� However, you might want to see an endocrinologist for your diabetes care if your blood glucose is consistently higher than you want it, if your primary care doctor is not also helping you keep your blood pressure and cholesterol near normal, or if you believe you need a change to make your diabetes care plan more flexible.��

�� An endocrinologist is a specialist in problems of the endocrine system, the glands of the body.� Since the pancreas is the gland that makes insulin, most specialists in diabetes care are endocrinologists.� In general, everyone with type 1 diabetes should see an endocrinologist.� People with type 2 diabetes should see an endocrinologist for diabetes care if they take three or more injections a day, use an insulin pump, or have diabetes complications.� If you have other medical conditions, such as asthma or multiple sclerosis, that can make your diabetes management more difficult; if you have other problems of the endocrine system, such as thyroid difficulties, or as mentioned above, you are not meeting your diabetes care goals, you should see an endocrinologist.

�� Sometimes, people see an endocrinologist only for a consultation, and then the primary care provider takes over the diabetes care again.� But for other people, the endocrinologist takes over the medical aspects of the diabetes care, seeing the person regularly to do diabetes-related medical tests and make adjustments in the diabetes care.� In this situation, the primary care provider still takes care of all other non-diabetes medical needs.� Note:� There is a real shortage of endocrinologists in the United States at this time.�

�� You should have a routine follow-up visit with the doctor who takes care of your diabetes every three to six months.� Visits should be scheduled more frequently if you are having trouble keeping your blood glucose under control, or if you have some complications from diabetes, or if you are sick.� Your doctor will order lab tests when they are necessary, prescribe medications when you need them, and watch for signs of diabetes complications.� Your doctor can help you decide when you need to work with any of the other professionals on this list.

�� A nurse diabetes educator can help you understand all the different parts of your diabetes care, and how they work together.� For example, your nurse diabetes educator can teach you about what causes diabetes, the effects of diabetes on the body, physical activity as a way of controlling diabetes, general principles of nutrition for diabetes control, medications, stress management, and emotional and social issues common with diabetes.� A nurse diabetes educator can also help you solve problems about how to do any parts of your diabetes care that are difficult for you.

�� A dietitian can help you understand healthy meal planning.� You need to know what kinds of food to eat, how much to eat, and when to eat to keep your body healthy.� You need a meal plan� designed especially for you, taking into account your personal physical needs, your cultural background, and your likes and dislikes about food.� You also can talk with your dietitian about ways to manage your meal plan that will allow you to have much more flexibility than was available in the past.

�� A dentist can help with care of your teeth and mouth.� Because diabetes can affect both teeth and gums, everyone with diabetes should see a dentist at least every six months.� Some people with dental or gum problems should see a dentist more often.

�� An eye specialist can be either an ophthalmologist or optometrist.� An ophthalmologist is a physician who specializes in diseases of the eye.� An ophthalmologist can do eye screenings, prescribe eyeglasses, contact lenses, eye medications, and low vision aids, and do eye surgery.�� An optometrist is a non-physician specialist who can do eye screenings, and prescribe eyeglasses, contact lenses, eye medications, and low vision aids.� Every adult who has diabetes and has useful eyesight should have a dilated eye exam at least once a year to screen for diabetic retinopathy and glaucoma.� If you have problems with your eyes, you may need to have eye exams more often.� If you have low vision, an ophthalmologist or optometrist who specializes in low vision care can help you find the tools and techniques that will allow you to make best use of the vision you do have.

�� A pharmacist can help you understand your medications.� You need to know how your medications work, how much to take, when to take them, what side effects to watch for, and whether your medications have any special precautions.� If you take medications for other medical conditions, your pharmacist can also tell you whether any of your medications interact in a way that might harm your body.

�� A mental health professional can be a psychologist, a psychiatrist, or a social worker.� A mental health professional can help you if you are having trouble accepting your diabetes or your diabetes treatment, or if you are having trouble making a change you need to make to care for yourself, or if you have depression or high stress that makes diabetes control difficult for you.� You do not need to be diagnosed with a mental illness to benefit from working with a mental health professional.� Learning to manage stress well, or to change your behavior about eating or exercise are good reasons for a person with diabetes to seek help from a mental health professional who knows about modern diabetes management.

�� Other health care professionals who might be involved in your diabetes care team include:

* A cardiologist, a heart specialist, can help if you have heart problems.

* An exercise physiologist can help you develop an exercise plan that works for you.

* A nephrologist, a kidney specialist, can help if you have kidney problems.

* A neurologist can help if you have damage to your nerves.

* A podiatrist can help with your foot care.

* A vision rehabilitation therapist can help if you have vision loss that cannot be corrected, by teaching low vision and non-visual methods for doing the tasks necessary for daily living and holding a job.

�� Finally, YOU are the most important member of your health care team.� You are the person who is responsible for doing almost all of your day-to-day diabetes care. You are also responsible for letting the other team members know if something is not working.�� You are the vital link that makes all the different parts of the team work together, so you can have as healthy a life as possible.

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YOU OWE IT TO YOURSELF

by Carol Eaton

�� My name is Carol Eaton. I live in Keene, New Hampshire,�� I live in New Hampshire, tucked down in the western corner of the state, next to Vermont, but I actually work for the Vermont Association for the Blind.

�� I got diabetes when I was 12 years old. I remember it very clearly.� I had been very active, a really physical kid.� I was outdoors all the time.� I came from a large family, with seven kids, and my father was a type 1 diabetic. So we had a family ritual every holiday gathering.� Back then it was urine testing.� Every holiday, the test strip would come out, and everybody would go and test their urine.

�� My test tape came out green, dark green, and I flushed it down the toilet. And I came out and everyone was saying, "oh, mine was yellow. It was yellow."

�� And I said, "not mine, mine was green." My mother, of course, wanted to see it. And I told her I'd flushed it down the toilet.� You know, I was at that age where I was probably being a little difficult.� I don�t think it really clicked with me, gee I�m a diabetic.

�� Then she told me I had to go and do it again, later, and I said that I didn�t have to go.� When I finally went to the bathroom again, I did the same thing --flushed it down the toilet.

�� Finally, after the third time, my mother made sure I realized she didn�t want me to just test myself again, she wanted to see the results of it.

�� I remember it mostly from my father. I was really close to my dad;� I can remember on Saturday mornings, him taking the glass syringe, and sterilizing it.� I can remember him sharpening the needles; the whole bit, you know, because they did not have� disposable syringes at that time.

�� In any case, what was interesting with my situation was this was a family ritual.� When we had tested at Christmas time, I was fine.� And it was Easter Sunday when I tested myself again. Of course, that was after having, you know, gotten into the Easter baskets some, but my blood sugar was off the roof.

�� Before I was diagnosed, we didn't regularly test.� I did it at Christmas and then three months later did it Easter time. We didn�t do it monthly, certainly. We did it maybe, three, four times a year, you know, when the family got together.

�� Then the strip was green, and I was obviously diabetic.� I was taken to the doctor, and they immediately put me into the hospital, and that was the beginning of it. I was immediately put on insulin.� Back then, it was one shot a day.� Get up in the morning, take one dose of a long-lasting type insulin, Lente insulin.

�� There was no blood testing at home.� It really was: get up, take your shot, then live your schedule according to your insulin.� You made sure you ate on time�your lunch, your dinner, etc., your snacks. But I never really had any problems, not until� years later when I finally started, to have kidney failure.

�� Throughout all of junior high and high school, and even into my college years. my father has always said, had always drilled into me that if you take good care of yourself, you won�t have complications. So, when I had my complications, it really hit me by surprise.

�� My father had been very, concerned about complications, and was very careful about his diet, his exercise and whatnot. His greatest problem was, his low blood sugars. I saw my father go into a lot of insulin reactions.

�� I can remember having to help my mom get my dad to drink the glass of juice, or whatever, to bring him out of a reaction.� I grew up with that.� I used to pride myself on the fact that I didn�t have low blood sugars.

�� All I know is that with my doctors visits and whatnot, everything seemed to be going just fine.� It took them quite a while to actually figure out I was having kidney failure.� My lab work wasn�t really showing it.

�� After, oh, 15, 16 years of diabetes, I started having some trouble with my vision.� I had been helping my sister, renovate a restaurant.� I had been staining walls and wood furniture all weekend long. I wore contacts at that time, and I can remember thinking the problems I was having must have come from being around all these fumes.

�� So I stopped wearing the contacts for a week, and then I realized my vision was changing.� I went to the doctor, but he just prescribed new glasses.� The new prescription glasses did not seem to work well, and I was not happy with them. Then he started taking a closer look into the back of the eye and whatnot, and indicated I needed to see a specialist.

�� They hooked me up with specialist right away who just said come back in three months, and I said, "What? Wait and see if it gets better or worse?"

�� And his comment was, "Well, basically yes." That�s all you can do. So, I immediately went home, got on the phone, and called the Joslin Clinic in Boston.

�� They had me come down immediately.� I was there the next day.� At that time, they were still doing a lot of experimental work with laser treatment, and they offered to put me into a pilot project.� We knew I needed laser treatment immediately on this one eye, as there were definite signs of diabetic retinopathy.� So, we just went ahead with treatment instead.

�� I wasn't showing any signs of impaired renal functioning, then, in June of 1983.� But my vision, it kept having hemorrhages in my eyesight.

�� I was still urine testing.� I was feeling physically okay. The big concern was the change in vision. I was still quite active, doing all types of things: camping, and skiing and traveling.

�� In June of �83, I got my first laser treatment.� But, week after week, I kept having more hemorrhaging, and the eye doctor started asking me, "How are your kidneys?"� And the doctors were not finding anything, any signs of elevated proteins or renal failure.� I continued getting laser treatments then, almost weekly, and within three months, I could no longer drive. I was not legally blind; but I certainly wasn�t able to drive anymore, and I certainly couldn�t drive at night. I was having great difficulty with nighttime vision. By November, I was hospitalized.

�� Something was obviously wrong, physically, and they could not find out what it was. They were doing every test under the sun.� I was in and out of the hospital repeatedly between November, and December and January, and finally, February 14^th, Valentine�s Day, 1984,� I just went into the emergency room at the hospital.� I was admitted, and after a couple of days, they told me my kidneys were starting to go. Uhm, so that was really the first sign of kidney failure. They couldn�t really tell me how quickly the kidneys would fail.

�� So anyway, by June, I was in complete kidney failure and on dialysis, and by July of 1984, I had a kidney transplant from my oldest brother.

�� I had been deathly ill. There were several occasions where they didn�t think I was going to make it through the night. It hit me, hit me fast and it hit me hard.� I was very sick on dialysis.

�� I had a brand new car, so my sister would drive my car and take me to dialysis.� And I�d get in the car with a towel and a bucket, because I would be sick on the way to dialysis and sick on the way home from dialysis, and then I would have one good day, and then I would be back on, you know.

�� I started dialysis in June.� Meanwhile, my family members had been worked up for a transplant.� I was very fortunate, coming from a large family.� All my siblings were willing to donate.� I never asked them.� I never even suggested. They were the ones who decided, "Carol, this is what you need to do. We�re getting tested. I�m a perfect match. I�m going to give you my kidney,"� and I was so sick at the time that I was pretty much, "Just tell me what to do so I don�t feel this way, and you know, I�'ll do whatever anyone tells me."

�� I was so ill, I really didn�t feel in a position to be making good decisions for myself.� I was worried about the danger of the transplant for my sibling's sake, more so than my own.� I was so ill that by the time I went in for surgery, I didn�t really care if I came out alive or not. I just didn�t want to come out feeling the way I was feeling. I just wanted that to end.� I had my kidney transplant on July 30^th of 1984.

�� It was unbelievable. I never dreamed I would feel as well again in my life. I never really realized that from a physical transplant, I could go back to feeling like I used to.� I had heard so much, and was so concerned about the immuno-suppressants, the anti-rejection drugs; it was just such unknown territory, for me, to go through a transplant, and take on somebody else�s organ, and then be on the anti-rejection drugs, I was filled with all types of anticipation about what that would mean for me.

�� Because my brother�s kidney was such a perfect match for me, and it began working immediately, I didn't need a lot of complex immuno-suppressive medications.� The doctors told me as soon as they got it connected, they could tell it was working, and both my brother and I ended up leaving the hospital a week early. He was in for five days -- but they'd told him that he�d be in for two weeks.� They told me I�d be in for three weeks, and I left in less than two weeks. So we both responded very well, and of course I was young. I was what, 27, I think, 28.

�� My age did make a difference, because we responded very well, and for me it was amazingly different because the day after surgery, when I woke up, I was immediately aware how much better I felt. Even though I just undergone this major surgery, and had this big incision, I did not feel nauseous.

�� The next ten years were extremely good. I had above normal creatinine functioning. Kidney functioning was excellent. I do remember after having had the transplant, talking with the doctors about how long the transplant would last. And they said� there�s no real way of knowing for certain, but, it could be the diabetes that took my first kidney could take my second kidney, my transplanted kidney. If that were the case, then in about 15 years, I might be looking at kidney failure again.

�� Five years out I was doing fine. Ten years out I was doing fine. Thirteen years out I was doing fine. But in my fourteenth year, my creatinine started to climb.� And I raised questions and concerns, during routine lab work, and they just said well, that was normal and not to worry about it. But then it started to really climb and they were still telling me not to worry about it. It was normal, but then I started to feel ill. And I started recognizing the symptoms having been through kidney failure before, I was very aware of the early signs, and when I started retaining fluid, and they're telling me, well it�s been a humid summer. I said you know, we�ve had a lot of humid summers in the last 14 years.

�� And I had been asking them, every year after my transplant, about pancreas transplants, because I knew, right after my kidney transplant, that I really wanted to get rid of the diabetes. I did not want to lose this perfect kidney I had.

�� And they told me to wait.� They said they needed to make a lot more progress with it. So they said ask again in five years. I remembered that, and five years later I asked, and they said no, not yet, and told me to ask in five years again. So now it's at the ten-year point, and I asked about a pancreas transplant. Right up until the end, when I was now facing kidney failure again, and they told me I probably had three years with my kidneys, and so there wasn�t really anything that they could do, or would do, until I went into kidney failure.

�� I was dealing with this new doctor, who had been following me for years, but always as a healthy post-transplant patient. I quickly reminded him of my history, when I was first told my kidneys were going, were starting to fail, and it would be one to five years, that within less than six months, I was in complete renal failure, and I had gone legally blind. Because my vision continued to worsen, by the time I had my transplant in 1984, I just had bare light perception. Over the course of the next year, I got continual improvement in my vision. Again, I was still legally blind, I improved to about 20/400 vision in one eye, and that was, the amount of vision I had.�

�� I think I talked to the instructors at Carroll Center for the Blind, before, but I was just too sick. I couldn�t go to the Carroll Center while I was awaiting the kidney transplant.� I went to the Carroll Center, starting in January of 1985, and was there for four months. And, I would say that type of rehab, when you are that young and have lost so much vision, fairly quickly, you just need so much rehab, that for me, getting it in a residential setting, such as that, was the best thing for me. I mean, here I am, I�m a rehab teacher in an agency that provides itinerant services, but there�s just no way, the needs were so great.

�� And the mobility needs, to be able to work your way up to a three-hour mobility lesson and to get mobility every day of the week. You just don�t get that with itinerant service

�� A residential setting is not appropriate for some, and I realize that. But for me, that was a life saver, a turning point for me.

�� So now I�m, you know ... it�s February. It�s my birthday, so I start at the Carroll Center still at the age of 27, but by the time I finished, I was 28, and I enrolled in grad school, right after I finished the Carroll Center.� I went to grad school to get my degree in rehab teaching for the blind.

�� I was still dealing with the Joslin, being followed by the Joslin, doing blood testing, I mean, it was a very strict regimen.� I tested five, six times a day, and was taking shots accordingly. I was taking the Humalog, the fast-acting insulin, along with a slow-acting ultralente, I believe, because they didn�t have Lantus at that time.

�� When I, with this intensive insulin therapy regime, found my kidneys are going, I really got very discouraged, and I thought, you know what, it really doesn�t matter how tight my control is. The diabetes is going to do what the diabetes is going to do. I was shocked that my kidneys were going and it was pretty much like clockwork. They had said in about 15 years, and that was about it was. About 15 years later, my transplanted kidney was starting to fail. When I talked to the Joslin, and they, again, were not willing to do a pancreas transplant; they did not want to talk about intervening with the kidney, and basically, they indicated I would need to wait until my kidneys failed, I just wasn�t willing to wait. I just thought, I have too much to lose here. I went through it once. I don�t want to go through it again. I�ve got donors who are willing, and available. I�ve already lost all the vision in one eye, only had partial vision left in one eye, and I didn�t want to lose the rest of the vision I had, because what happened in that course of that year, after the transplant, while I was in grad school, my vision did continue to improve. And that�s where I went from having bare light perception, to frequently traveling, without a cane. I mean my vision was ok, in a familiar environment; I didn�t bother with a cane anymore.

�� So, at that point, I decided to contact Minnesota.� And I spoke with Dr. Sutherland.� So, sure enough, the story there was completely different.

�� He said:� "Time is of the essence. You need to come quickly so we might be able to save this kidney."

�� I flew out there, went for a week-long evaluation. They did a biopsy of the kidney. They said: "Yes, it is not rejection. It is diabetic, diabetic changes are occurring, and therefore, we would like to get you on a pancreas transplant, but you are going to need a kidney transplant, because you probably know this regime."

�� With a pancreas transplant, the medication they want to put you on can do some damage to the kidney. It�s really hard on the kidney.� Now, for most people, who are getting kidney/pancreas transplants right off the bat, the little bit of damage the medication does to a high functioning kidney is not going to be problematic. But for me, my kidney was already starting to show diabetic changes.

�� And he said, "we don�t often deal with people in this situation."� I was going to be a first. "But," he said, "so we�ll just have to monitor it closely."� So, anyway, I went through my evaluation, a very thorough evaluation. Wonderful. They actually found a heart blockage, which they did not expect to find based on my physical activity and my otherwise general state of good health.

�� So they did an angioplasty, and ended up putting a stent in, which was a shocker. They said I was basically a heart attack waiting to happen, with no real indications of it.� Now in retrospect we know some of what I was feeling, what I thought to be the kidneys starting to fail, actually was a blockage to the heart causing some of the fatigue and the difficulty with walking up a flight of stairs.

�� So, when I came back to Boston, when I came back home and I�m on the waiting list, then immediately the Joslin doctors said they could do the transplant.� They would do the transplant. I said, "not at this point."�

�� They had said, Medicare, you know, you got to wait for your kidney to fail. You know, it just was ridiculous back then. But anyway, I knew a little bit more, I was a little bit wiser, and little older and I just decided I wasn�t going to go through kidney failure again. So at that point, I just stopped dealing with Joslin and started dealing with the Minnesota team, and within three months, I did get the call. They had a pancreas for me. They told me the average waiting time was three months. It could be a week. You know, it could happen within a week, but the average waiting time was three months and my call came three months to the day.

�� So, I went and got my pancreas transplant. Now keep in mind, they had told me that because of the organ I was going to need from a cadaver, a non-blood related organ, I was going to need stronger medication and that would be hard on the kidney. So, we had, at the same time while I was waiting for a pancreas, been working up family members. And my oldest sister had decided to give me her kidney. So, we actually had a date scheduled for the kidney transplant; but the pancreas came, so we went, I went and got the pancreas, and then we postponed the kidney transplant. They wanted to wait three months after the pancreas to do the kidney transplant.

�� I got my pancreas in March and then I got my second kidney on July 8th. So the first one was July 30th of 1984, and my second one was July 8th of 1999.

�� My biggest problem with the pancreas transplant was medication. Again, too much medication.� They tried to put me on, not cyclosporine, Cellsept. Prograf and Cellsept, and I could not tolerate the Cellsept. They would put me on, take me off for a month; as soon as all my numbers would fall back into place, they�d put me back on. Finally, after doing this for about nine months, I said I just can�t keep doing this. I can�t. It was really making me nauseous.� I�d end up dehydrated, have to go into the hospital, and so we didn�t really want to do that, so finally they just stopped the Cellsept.

�� A kidney transplant is amazing because that gives you your physical health and stamina. I mean, you feel well.� But, a pancreas transplant really gives you your life back. Not that you're not living a full life with diabetes, because you are. But for me, never really having lived my life as an adult free of diabetes ..., I mean I was a child when I got diabetes.

�� I had no idea what it was like to really just live a spontaneous lifestyle -- not have to worry about: do I have the snack? Do I have the insulin? Do I have a syringe? Do I have the blood test strips?

�� Refraining from sweets was not the biggest problem for me. The low blood sugars were a problem for me.� My thing was I always felt like I�m just eating, I eat because I have to eat. Not necessarily because I want to eat.� I eat because I have to feed that insulin. I can�t let the insulin take over here. I gotta keep in control.

�� It really came by surprise that five years later, I started to go through a little bit of rejection of the pancreas.� What happened was, I did have the kidney transplant. I had the pancreas transplant. Everything was working beautifully. My bigger concern had always been the kidney, rather than the pancreas. The pancreas, everything was perfect and beautiful, and everything was great.

�� The kidney functioning, the creatinine never really got as low as we would have liked. So, for the last five years, my creatinine level, which, as you know, is indicative of your kidney functioning, was always slightly above the normal range, and they had pretty much said, well that�s going to be your level. You know, you�ll never be as low as you used to be, so I was accepting that.� When I reached the five-year mark of my pancreas transplant, never having had any problems with it whatsoever, I was told first of all, that I could reduce the frequency of my lab work; I could just have lab work done every six months. So, okay, that�s great.� But, further into the discussion, we were talking again about my creatinine level, and it was decided we could afford to reduce my Prograf by one milligram.

�� Well, one milligram was one third of my medication. I had been taking two milligrams in the morning and one milligram at night -- and they cut me back to one milligram in the morning and one milligram at night. Which was fine, and would have been fine; but they didn�t mention it, and I didn�t stop to think about it, we still kept me doing the lab work at six months. �When I went, six months later, to do my lab work, we found the pancreas was not functioning up to par, and that�s when it was determined I might be rejecting.� I�m quite certain the reason for the rejection was the reduction of the medication, and not monitoring it more closely. And that is just a sorry mistake. I kick myself that I didn�t think about it. I don�t really blame Minnesota.� They've been so good to me. They are so capable. I think it was just an oversight. It probably never should have happened, but it did, and fortunately we caught it soon enough.

�� And, I flew out to Minnesota right away, spent a week in the hospital. Went through IV treatment there to kind of wipe out my immune system, and basically I�m back now.� For all we know, my pancreas really could function at full capacity now, but they don�t want to overtax it.� So I�m taking nine units of Lantus every morning. I started out at 20, and then they dropped it to 15.� By the time I left the hospital, I was down to 12, I think.� And since I came home from the hospital, came home from Minnesota, we dropped it down, based on my blood sugars, I was having low blood sugars in the morning, so I now take nine units, and they want me to do that for about two or three more months, just to give the pancreas a rest.

�� I will share this, because this is one thing that got me.� What�s great about Minnesota, they give you a list of names of people who have had successful transplants, unsuccessful ones, blood related, not blood related, etc., pancreas, pancreas alone, pancreas with kidney.� I called a lot of those people, and talked to those people.� It helped, as I was a little nervous about the pancreas transplant.

�� But the one quote I heard, I immediately wrote it down. I can�t tell you where I heard it or anything. I just know I heard this, which was: �Any risk worth taking bears the chance for substantial reward.�� I used to just repeat that all the time. Any risk worth taking bears the chance for substantial reward. I thought, you know what? It might be a little risky, and I really, truly believed it was the right thing for me. What I always say to people is, you just owe it to yourself to check it out, to find out about it. I would never say every diabetic should do this.

�� For me personally, it was the best thing I ever did. I was having way too many complications with the diabetes.� I was a well controlled diabetic, who took my diabetes seriously, and despite that, could see what the diabetes was taking from me and doing to me.� My husband was convinced I was going to end up with an amputation if I didn�t do something.� As it turned out, I probably would have ended up with a heart attack.� But for me it definitely was the right thing, and I think just everybody owes it to themselves to stay up to date. Be aware of what�s out there, really ask questions, and keep yourself educated, because you can�t just rely on the doctor.

�� You, the patient, are an important part of the team.� You really need to have a doctor you feel confident with and who you can converse with about your disease.� Diabetes is not a disease you can just have the doctor take care of and then you forget about it.

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TO OUR READERS

includes graphic, NFB "Whozit" logo

Dear Friends:��

�� Voice of the Diabetic is your source for the latest diabetes information, FREE, in print, on 4-track audiocassette, on the World Wide Web (www.nfb.org/voice.htm).� For almost 20� years, we've delivered it to you, four times a year, as a public service, because we know you need it.

�� The U.S. Centers for Disease Control tells us as many as 18.5 million Americans have diabetes, and that number is expected to rise.� More people will need quality diabetes information, delivered in plain language, in an upbeat, optimistic manner.� More people will need positive examples, role models, and success stories.� More people will need to know that, no matter what complications diabetes may bring, no one is alone; all have options -- and you can live productively and independently, even if dealing with blindness, kidney failure, or diabetic nerve disease.

�� More people will need Voice of the Diabetic.�

�� Our circulation exceeds 342,000 and continues to grow -- but our printing and postage cost thousands of dollars, each issue.� Our advertising income helps, as do the many individuals and organizations who volunteer their time and labor to assist us; but what enables the Voice to continue, and to keep growing, is your financial support.� There is no subscription fee, so the Voice depends on donations and contributions from readers.

�� We need your help.� You know we need to keep at our work, and you know we need to grow, to reach more people who need this information.� Help us do it!� I ask you to make a donation, if possible. �Whatever amount you contribute will be greatly appreciated.� Please make your tax-deductible contribution payable to the National Federation of the Blind.� Mail your contribution to:��

�� VOICE OF THE DIABETIC

�� 1412 I-70 Drive SW, Suite C

�� Columbia, MO 65203��

�� On behalf of the Diabetes Action Network, I thank you for your continued interest and support.�

�� 

�� Best regards,

�� Ed Bryant

�� Editor

�� Voice of the Diabetic

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LIFESCAN METER PROBLEM

�� We have been asked to announce:� Lifescan, maker of many different blood glucose monitors, reports a problem with their OneTouch Ultra, OneTouch FastTake, and InDuo system.� Here's what they discovered.

�� The above glucose meters are designed to read out in either mg/dl (USA) or mmol/L (European) units.� Under certain extreme� circumstances, these meters have been observed to switch units of measure, from mg/dl to mmo/L or mmo/L to mg/dl.� The occurrence is rare, but LifeScan asks all users of the above to regularly check their meters and determine whether or not their results are displaying in the correct unit of measure.�

�� How do you tell?� Mmol/L numbers are very low, and include a decimal point.� They look a lot like A1c numbers.� Mg/dl numbers (if you're doing well) will range around 100.� If your blood test results don't make sense, your meter may have "shifted gears" on you.� Please note:� The LifeScan Profile, Basic and SureStep meters are not having this problem, and are not covered by this warning.� Also, this is an electrical problem; no test strips are in any way affected.

�� If you have a LifeScan OneTouch Ultra, FastTake, or InDuo, and you are experiencing these problems, or need information, call LifeScan's 24-hour customer service line; telephone: 1-877-220-2774.�

�� 

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PAYING FOR DIABETES

by Peter J. Nebergall, PhD

includes photo of Peter J. Nebergall

�� This article appeared in Voice of the Diabetic, Volume 17, Number 3, Summer 2002 Edition, Published by the National Federation of the Blind.� Updated April 2005.

The Problem

�� Several years ago, a widely-publicized international study ranked American health care 37^th in the world, principally because it was not �universal,� or �single-payer,�� as in nearly all other developed countries.� One of the survey�s authors observed:� �Poor health is the biggest producer of new poverty in the United States.�� Our doctors and hospitals may be very good indeed, but our financial �safety-net� has holes in it -- and if you have diabetes, you�ve probably found a few of those holes already.

�� The direct medical costs of diabetes in the U.S.A. (the money we pay the doctor, the hospital, and the pharmacist) run about 44 billion dollars a year, according to the U.S. Centers for Disease Control.� That works out to $4000 dollars per diabetic per year -- above and beyond our already high general health costs and fees.� That's a hardship for a lot of people -- especially if you receive an hourly wage, and don't have a fantastic "benefits package."

�� If you�re old enough or sick enough to qualify for Medicare, you�ll have found the program covers a lot, but not everything.� If you have private insurance, it may or may not be adequate for your needs, and the HMOs, desperate, drowning in red ink, are cutting back wherever they can.� Millions of people have no prescription coverage, or no medical coverage at all.� How do we pay for what we need -- now?� Although we can�t address �paying for the doctor� today, there are options, if you need some help paying for your diabetes medications.

Paying for Medications

�� Outside of Medicare, Medicaid,� and private insurance, there are some alternatives to paying list price out of pocket -- maybe more than you think.� Your doctor is probably not aware of them either.� There are the private "drug discount cards," the Medicare-approved cards, the company specific charity programs (see PhRMA, below), and whatever new initiative the U.S. Congress finally adopts.�

�� Private firms and "clubs" routinely offer "as seen on tv" pharmacy discount cards.� Please be careful with these, as the "benefits" may be minuscule.� Some of them lock you into purchasing from a very small number of suppliers; discounts "from list" can be insignificant.� Too many of these "cards" are put out by people taking advantage of your confusion to line their own pockets.� If you "never heard of the company," there is probably good reason.��

�� The big drug manufacturers, like Pfizer and Eli Lilly, offer a better deal for the low-income consumer.� Their �discount cards� for individuals eligible for Medicare (SSI or SSDI) who meet their income requirement (less than $18,000 individual or less than $24,000 family) and who have no other prescription drug coverage.� These cards allow a user to purchase a month�s supply of any of the issuer�s products, for a low set fee ($12 to $15 per med per month).� Naturally, a drug company�s (brand-name) card will only help you with products distributed by that drug company.

�� Since the arrival of government-sponsored prescription discount cards in May of 2004, things have grown far more complex.�� Officially "temporary," the more than 70 different "Medicare-Approved" prescription drug benefit cards were complicated, confusing, and changeable.� Not government-issued but government-approved, most offered discounts of "25 to 30 percent off list," but private discounters routinely sell some of these medications at 40 percent off list or more, and users who bought in to the Medicare cards, expecting to receive the prices they were getting from Wal-Mart Pharmacy or one of its competitors, could be disappointed.� Plus, a user was locked into one card per year, but the drug companies could change drug prices and availabilities at any time.

�� Meant to be a stopgap, to "buy some time" for the Federal Government to figure out something better, the various "Medicare-approved" cards ran the gamut -- offering different coverages, different discounts, and, past the Medicare-mandated eligibility requirements, different pricing.� It took a lot of time, a lot of research (many people who need such benefits don't have internet access, or the willing grandchildren available to execute the complex internet searches and comparisons necessary to choose wisely), and there was too much "by guess and by gosh."� "You have to study it, if you wish to save any money with it," I wrote of the program, when it first came on line -- and the cards' study requirements have been worse than burdensome.� However, all the cards were not created equal -- and there is real possibility of making a major mistake, of choosing the wrong card for your needs, and not saving yourself any money.��

�� Individuals whose incomes were below a preset level (about $16,800 in 2004) were eligible for a $600 government credit toward medication expenses.� If their incomes were higher, they could buy into a card, but would not receive the $600 benefit.� But, they had to choose which card.� Which one?� Which card offers the best discounts on the medications you need?� Which one offers the best savings for you?

PFIZER (�the Share Card�)

�� Effective March 1, 2002, holders of this card could purchase a 30-day supply of any listed Pfizer prescription product, for a flat fee of $15 each.� For many drugs, this was a major discount.� It was certainly an example to Pfizer's competitors and the U.S. Government.� Pfizer makes both type 2 diabetes medications and other drugs that treat common diabetes complications, and the Pfizer Share Card could be used at many retail pharmacies.

�� Pfizer has replaced the Share Card with two programs:� Connection to Care (for individuals with low income and need), and the "Pfriends" card.� Recognizing low-income drug purchases are a hardship whether one is of Medicare age or not, Connection to Care (within its guidelines) is extremely generous, and �Pfizer Pfriends is a more "adaptable" card than its competitors, less stringent in its income maximums, and not age-mandated.� It is open to all, and one would hope the new Medicare prescription benefit, scheduled to arrive in 2006, might resemble these two� Pfizer programs.� Of course all drug company card discounts only apply to that company's products, but Pfizer's initiatives look like a great place for the government to start.

�� For more information, or to receive an application, telephone: 1-866-776-3700, or see the website:� www.pfizerhelpfulanswers.com

ELI LILLY (�LillyAnswers Card�)

�� Similar to the above, includes many diabetes medications. contact Lilly at 1-800-795-4559.

The PhRMA group, for medication assistance

�� The pharmaceutical industry has a tradition of providing medications free of charge to physicians whose patients might not otherwise have access to necessary medicines.� Members of the Pharmaceutical Research and Manufacturers of America (PhRMA), an association of drug manufacturers, have created a directory listing each participating manufacturer, and the products that manufacturer has decided to list.� Eligibility rules vary between manufacturers, and all prescription medications are not included, nor are all drug manufacturers members of PhRMA.� Still, the association's patient assistance program (which does include insulin, oral diabetes medications, and cyclosporine) is a useful safety net.� PhRMA's directory is in fact quite extensive.

�� Transfer of prescription medications is regulated by many laws.� Upon approval, medications are shipped to the prescribing physician.� For information, and a copy of their Directory of Prescription Drug Patient Assistance Programs, physicians should contact:� PhRMA, 1100 Fifteenth Street NW, Washington DC, 20005; telephone: (202) 835-3400.� Alternatively, the directory may be inspected on line, or downloaded from their website: www.phrma.org

The Cost Containment Research Institute

�� Located in Washington, DC, the Institute publishes a booklet titled: Free and Low-Cost Prescription Drugs.� Regularly updated, it provides an alphabetical listing of nearly 1200 drugs available to people for free, or at very low cost from the manufacturer.� Also offered are listings of clinics and hospitals providing free medical care, a booklet titled Top 17 Ways to Cut Your Prescription Drug Costs, and information on drug purchases in Canada.� The drug booklet costs $5, and is available from:� The Cost Containment research Institute, 4200 Wisconsin Avenue NW, Suite 106-222, Washington, DC 20016; telephone (202) 318-0770; fax (202) 318-0769; website: www.institutedc.org� ��

Prescription Drug Help

�� If you have prescription medications, and you can't afford them, you may know a number of manufacturers provide free medications -- but the problem is finding the right one, and then completing the paperwork.� If you qualify (low income, no prescription coverage), The Health and Wellness Educational Center will help you find your necessary prescription medications, and will help with the paperwork.� Contact: (205) 652-6557; e-mail: [email protected].

�� MEDICARE has its own consumer website:� (www.medicare.gov), offering a prescription drug assistance locator program that searches online for public and private programs that offer discounted or free medications.

Where Are We Going?

�� The Medicare reform law that brought us the prescription drug cards in 2004 was intended to be temporary.� A product of many compromises, it was and is meant to be replaced in 2006 by something better.� What will that be?� I contacted several national-level politicians, and asked, but none have returned my calls or answered my notes.

�� I'm a bit surprised.� I figured there wasn't a pol alive who could refuse the soapbox -- but they have kept silent, and we have to remember that for decades, while hospital charges and drug prices have rocketed, and the number of Americans whose employers do not supply health insurance approaches the total population of France, a lot of our legislators have blocked all meaningful healthcare reform, "for ideological reasons."� It's going to be a nasty fight -- and that may be why these elected officials stayed silent.

�� However, it's time.� Talk to your representatives and senators.� Ask them what they want to see, as a Medicare prescription drug benefit, in 2006.� Then, talk to your friends and neighbors.� ��

Conclusion.

�� Is it "Your money or your life?"� No.� It's not that bad.� There are options.� If you do the legwork, if you meet the income guidelines (which are pretty reasonable, when you do the math), there are alternatives out there.� It may take you some time, but they're out there.�

�� What should we be doing?� We should be joining the rest of the world, with a national health service, guaranteed basic access, and price controls on basic medications.� Initiatives like Pfizer's are commendable, but they are stopgaps, and the companies know it.� "Until the Administration, Congress, and the states design an appropriate, high-quality, long-term solution ... we are bridging the gap," says Pfizer.

�� Here's hoping Pfizer's competitors, and the government, quickly follow their example.

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VOICE DISTRIBUTORS NEEDED

�� Since the VOICE is now offered free, our Diabetes Action Network will provide extra copies to anyone wanting to help spread the word.� We will gladly send from five to five hundred-plus copies each quarter to be used as free literature.� Medical facilities can order as needed for patients.� Individuals can usually place copies of the VOICE in libraries, pharmacies, hospitals, doctors' offices, or other public locations.

�� Diabetes education is essential.� Anyone who distributes the VOICE will be helping people with diabetes, and their families, to learn about the disease and its ramifications; to learn that they have options; and that their world is far greater than whatever "limits" may be imposed by the disease.� If you would like to help spread the word by distributing the publication, please contact:� Voice of the Diabetic, 1412 I-70 Drive SW, Suite C, Columbia, MO 65203; telephone:� (573) 875-8911, fax: (573) 875-8902.� NOTE:� Please provide a phone number so we can reach you.�

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ANOTHER NEW TALKING METER

�� by Ed Bryant

includes photo of the SensoCard Plus talking glucose monitor

�� Citizens of Great Britain and the European Union now have a "home-grown" talking blood glucose monitor to help them manage their diabetes.� Diabetes UK estimates 400,000 people in the United Kingdom are dealing with both diabetes and significant visual impairment, so they could benefit from this device.

�� This new meter, the SensoCard Plus, from England's CDX Ltd., is a tiny, one-piece unit, much smaller than any other talking meter available today.� Simple and pocketable, it features, along with the voice, a large screen display, and test strip coding by means of a "code card" rather than visual cues.� One large, easy-to-find button controls the unit.� The meter�s memory holds 150 tests, along with time and date, and it provides 7-, 14-, and 28-day averages.� Results are downloadable to your PC.�

�� The strip uses capillary action.� Insert the flat end into the meter; that turns the machine on.� Lance, and bring the tip of the protruding test strip against the drop of blood.� You can touch the strip.� In five seconds, you should have your result.

�� The price of the SensoCard (in England) is quite low, for a talking monitor; less than $300.� Test strip cost is competitive; about $44 per container of 50 strips.� And, the machine has passed the UK's tough testing and licensing hurdles.� As of June 1, meter and strips were covered under the British National Health Service.� The British government is satisfied this new meter works, accurately and consistently.

�� At this time, CDX is negotiating with the US Food and Drug Administration (FDA) about bringing the SensoCard Plus into the United States.� As the meter incorporates no revolutionary new technologies, and as the assembling factory (located in Hungary) has built meters before, no issues are anticipated.

�� When will the SensoCard Plus be available for purchase in the USA?� What will it cost?� The first answer is in the hands of the FDA.� The second question will only be answerable once there is a US distributor for the product.� How much will the distributor add to the UK price, to bring the meter into the United States?� We don't know yet.

�� I am in close contact with officers of CDX Ltd.� They will be shipping me a meter for evaluation.� Here�s what I know; I'll have more to report, shortly, and Voice of the Diabetic will keep you posted, or you may contact CDX yourself:� Cunningham Diagnostics Limited, Stanfield Business Centre, Sunderland, SR2 8BL, England; telephone: 01144-191564-2036; fax: 01144-191564-2037; email: [email protected]; website: www.cdx.uk.com�

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BOOK REVIEWS

by Ruth Mencl, MN, RN, CDE

includes photo of Ruth Mencl

�� Note:� This issue, our Voice reviewer got some help from fellow diabetes professionals.

�

DIABESITY

by Francine R. Kaufman, MD

Reviewed by Ruth Mencl, MN RN CDE

�� A compelling "Call to Arms" would best describe Diabesity. Dr. Kaufman comes with top credentials as a pediatric endocrinologist, and a past president of the American Diabetes Association. She also provides a real insight into the heart and soul of a medical provider, and the tough job it is to be honest about the dangers and long-term effects of a very serious disease. It would be helpful for the reader to have at least a cursory knowledge of diabetes, since she does discuss some complex diabetes issues.

�� She differentiates between type 1 and type 2 diabetes in children, using a combination of explanation and illustration of the components of both. We see episodes of newly diagnosed type 1 patients, versus the obese 14 year who feels fine with a blood glucose of 400 mg/dl.� She discusses the change over a few decades, from a society that played and worked hard physically, and ate homemade meals, to one where children sit, eat, and play video games, since it�s unsafe to go out to play after school. One of her patients got shot exercising in her neighborhood in the midst of warring gang members.

�� She describes a society where fast food is king, and mom and dad are both too tired to cook in the evening. Our kids are being bombarded with messages on TV and even at school, as high caloric, cheap food, and minimal exercise pervade our schools. Dr. Kaufman links our genetics and environment to the diabetic/obesity epidemic we are experiencing, not only in the U.S., but globally, as countries attempt to emulate our lifestyle. Her crusade includes ideas about the need to change our culture to one that promotes exercise and healthy eating. She challenges decision makers to make changes to benefit our society before our medical resources are overrun by 30-year-olds routinely having heart attacks and strokes. I highly recommend this book for company CEOs, school administrators, politicians, and any parent who loves their children.

�� It is available at Borders and Amazon websites for approximately $17 with member pricing. It lists for $27 but can be bought used at Amazon for $13.50, or can be downloaded on Adobe Reader for $12.21.�

THE DIABETES AND HEART HEALTHY COOKBOOK

by The American Diabetes Association

Reviewed by Ruth Mencl, MN RN CDE and Barbara Simpson, RD, LD, CDE

�� The Diabetes And Heart Healthy Cookbook has well thought out recipes that would be tasty meal options. It provides a week of sample menus at the beginning, and these would be particularly helpful for people wanting snacks between meals. However, sometimes the lunch selections are a bit smaller in order to accommodate a higher content of carbohydrate for a snack, such as the 1/2 cup "Apricot and Apple Granola," a 37 gram carb portion. The high carb snacks can make the pre-meal blood sugars higher so the buyer would need to beware in that area.

�

�� The sample menus do not show the carbohydrate amounts at each meal and snack. That would help the person with diabetes to fit in the appropriate amount of carb at their meals.� The average daily carbohydrate intake for these meal plans is between 174 and 225 grams per day. This may be useful for a man; but for those people wanting to lose weight, the recommended amount would be more in the 160-180 gram per day range.

�� The book does provide cooking tips throughout, and they are unique and helpful. Exchanges and carbohydrate amounts are listed clearly in the recipes.� A fair amount of cooking is required, for some of the recipes -- which would appeal more to people with fewer time constraints. The Diabetes and Heart Healthy Cookbook would be a useful adjunct for someone trying to put together a diabetes meal plan who desires to have two to three snacks per day. It lists for $16.95, and can be bought on Amazon.com for $11.53.

GRAHAM KERR'S SIMPLY SPLENDA COOKBOOK

With Suzanne Butler

Reviewed By Ruth Mencl, MN RN CDE, and Barbara Simpson, RD LD CDE

�� Graham Kerr's cookbook has excellent recipes, using lots of colorful fruits and vegetables, low fat, decreased saturated fat and low sodium. The sauces, spreads and toppings are fantastic! They are particularly lower in carbohydrate and sodium, and will take a little extra time to prepare, but it seems to be well worth the effort. The ketchup and barbecue sauce look really good. It would be helpful to be more specific with the serving size on some recipes. Also, it would be good to have a little less white flour in the recipes. A better option would be unbleached flour.

�� The exchange amounts and other dietary information are labeled clearly for each recipe. This book focuses on the new sugar-free sweetener Splenda Granular in an effort to reduce calorie and carbohydrate amounts without losing good taste. Mr. Kerr has a special interest in diabetes, due to his wife's diagnosis, and appears to be focused toward traditional, tasty recipes that are simple to make with readily available ingredients.

�� This cookbook offers simple, easy-to-read, step-by-step instructions. We would recommend it for those who are looking for special treats that are already modified. It lists for $12.95 in the U.S. and on Amazon.com for $10.36.

--------------------------------

�� 

HEALTHY HOME COOKING

by JoAnna M. Lund

includes photo of Joanna Lund

�� Welcome back into my kitchen, where the cooking is easy and the food is both healthy and tasty!�� Summer is here, and with hot weather come even more healthy eating and cooking challenges.� Most of us try to cram too many plans into too little time, and end up in a hurry most of the time.� That means things like shopping and cooking wisely are often left on the back burner, with promises to do better in the future.� Well, the future is here!�� With these easy and timely tips, it's almost quicker (not to count easier and cheaper) to cook at home, rather than eating takeout all summer.

�� To make your own virtually fat-free croutons for salads is as easy as one-two-three!�� (1) Cut up two slices day old bread into cubes.� (2) Combine 1/4 teaspoon dried parsley flakes, 1/4 teaspoon garlic powder and 1/8 teaspoon black pepper in a zip-lock sandwich bag.� (3) Shake the cubes in the seasoning mixture, place them on a baking sheet sprayed with butter-flavored cooking spray and bake at 300 degrees until browned.� Double or triple this recipe as needed, and store the croutons in an airtight container.

�� If you like to have "torn salad greens" ready and waiting for salads, why not try this easy trick?� After washing and tearing the greens, place an inverted saucer in the bottom of the salad bowl, pile the greens over the top, and cover.� The excess liquid drains off under the saucer, and the salad stays fresh, crisp, and tasty.

�� Did you know you can stir up your own self-rising flour, with just a few ingredients you probably already have on hand?� All you do is combine four cups all-purpose flour, two tablespoons baking powder, and two teaspoons table salt.� Cover and store in a dry place.� Use whenever a recipe calls for self-rising flour.

�� Do you want the flavor of toasted coconut, but don't want to do it a tablespoon or two at a time (which is all my recipes usually call for)?�� Well, then, simply layer one cup of flaked coconut in a thin layer in a glass pie plate.� Microwave on HIGH (100%) for 6 to 7 minutes, stirring after every minute.� Place the pie plate on a wire rack and allow the coconut to cool completely.� Store the cooled coconut in a covered container in your refrigerator.� Then, when you want that tablespoon of toasted coconut, all you have to do is open your container and it's waiting for you.

�� Do you love Mexican dishes that feature refried beans -- but don't love the extra fat associated with them?� Or maybe the local grocery just doesn't carry the fat-free versions?�� Either way, you can make your own, by simply rinsing and draining a 15-ounce can of pinto beans, placing them in a large bowl, mashing them with either a potato masher or a sturdy fork, then stirring in about 1/3 cup chunky salsa and one teaspoon of chili seasoning.�� Cover and refrigerate for up to three days.� Use in any recipe that calls for refried beans.

�� What to do with leftover baked ham?�� Cube it and freeze in one-cup amounts.� Forget about it for at least two weeks, because it won't be special to you again until about then.� Over the next few months, you can savor the flavor of home baked ham all over again.� Just be sure to use good quality freezer bags or containers -- and date each.� The last thing you want is freezer burn on your special ham packages.�� When using at home, open the top, and thaw in the microwave, while preparing the rest of the dish.� If you're planning on ham dishes while camping, throw a few containers into the RV freezer just before heading out of town.�� Everyone will think you're doing magic in the galley -- and all you're doing is reheating leftovers!

�� A quick and easy way to make rice fluffy after cooking is to stir with a fork.�� Also, make sure no excess moisture remains.� If there is, simply put the pot back on the stove on low and cook for an extra minute or two, stirring to the bottom of the pan to ensure the excess moisture cooks away.� There is nothing better than dry fluffy rice and nothing worse than soggy, clumpy rice!

Now for our Recipe Makeovers

�� RN of IL sent me an unusual recipe for me to "lighten up." If you like green peppers and rice, then it's almost a sure thing� you will love my revised version!

Skillet Stuffed Peppers

Ingredients:

3 cups coarsely chopped green bell peppers

8 ounces extra-lean ground sirloin beef or turkey breast

1/2-cup chopped onion

1-1/4 cups water

1/4 cup reduced-sodium ketchup

1 cup uncooked Minute Rice

1 cup cubed Velveeta Light processed cheese

Instructions:

�� In a large skillet sprayed with butter-flavored cooking spray, saute green pepper, meat, and onion for 10 minutes. Stir in water and ketchup.�� Add uncooked instant rice.� Mix well to combine.� Lower heat, cover and simmer for five minutes.� Stir in Velveeta cheese.� Continue simmering, uncovered, for five minutes or until cheese is melted and rice is tender, stirring occasionally.�

�� Serves eight.� Each serving equals:� 254 calories, 6gm fat, 20gm protein, 30gm carbo., 490mg sodium, 2gm fiber.� Diabetic Exchanges:� 2-1/2 meat, 1-1/2 starch, 1-1/2 vegetable.

�� RR of MI, requested I revise a favorite macaroni salad so her family can still enjoy it with their cookouts, even though she now needs to watch her carbs and sugars, due to diabetes.

While I got rid of a lot of the fat and carbs in this recipe, I did not get rid of the great taste!

Family Style Macaroni Salad

Ingredients:

1/4 cup Land O'Lakes no-fat sour cream

3/4 cup Kraft fat-free mayonnaise

1/4 cup sweet pickle relish

one tablespoon prepared yellow mustard

two tablespoons Splenda Granular

one tablespoon dried onion flakes

1/8 teaspoon black pepper

two cups cooked elbow macaroni, rinsed and drained

Instructions:

�� In a large bowl, combine sour cream, mayonnaise, pickle relish, mustard, Splenda, onion flakes, and black pepper.�� Add macaroni.� Mix well to combine.� Cover and refrigerate for at least 30 minutes.� Gently stir again just before serving.

HINT:� Usually 1-1/3 cups uncooked elbow macaroni cooks to about 2 cups.

�� Serves 6 (1/2 cup each). Each serving equals:� 113 calories, 1gm fat, 3gm protein, 23gm carbo., 354mg sodium, 1gm fiber.� Diabetic Exchanges:� 1 starch, 1/2 other carbo.

�� I hope you enjoyed our time together in the kitchen.� Remember, if you'd like me to revise one of your family favorites so it's healthier, send your request to: JoAnna Lund, Healthy Exchanges, PO Box 80, DeWitt, IA 52742.� Also, be sure to visit my website at www.healthyexchanges.com for more "common folk" healthy recipes to try.� Until next time� ... JoAnna

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RECIPE CORNER

includes art:� fruits and vegetables

�� The following recipes have been reprinted from Healthy Calendar Diabetic Cooking: A full year of delicious menus and recipes, by Lara Rondinelli, RD, LDN, CDE, and Chef Jennifer Bucko. Copyright (c) 2004 the American Diabetes Association.� Reprinted with permission.

Green Bean Tomato Salad

Makes: seven servings

Serving Size: 1/7 recipe

Prep Time: 20 min

Ingredients:

16 ounces frozen cut green beans

two tablespoons olive oil

1/4 cup apple cider vinegar

1/2 teaspoon salt

two teaspoons sugar

1/8 teaspoon dried basil

one teaspoon Dijon mustard

three tablespoons slivered almonds, toasted

two cups cherry tomatoes, halved

Instructions:

�� Cook green beans according to package directions.� In a salad bowl, whisk together olive oil, vinegar, salt, sugar, basil, and mustard.� Add green beans, almonds, and tomatoes and toss well.� Serve warm or cover and chill 30 minutes.

Exchanges:� Two vegetable, one fat.

Calories: 86, total fat: 6g, cholesterol: 0mg, sodium: 193mg,

total carbohydrate: 8g, protein: 2g.

Lemon Chicken with Bell Peppers

Makes: four servings

Serving Size: one chicken breast

Prep Time: 15 min

Ingredients:

four 4-ounce boneless, skinless chicken breasts

1-1/2 teaspoons dried oregano

1/2 teaspoon salt

1/4 teaspoon ground, black pepper

1/4 teaspoon cayenne pepper cooking spray

1-1/2 cups red bell pepper strips

1-1/2 cups green bell pepper strips

1 tablespoon grated lemon rind

1/2 cup of fresh lemon juice

1/2 cup of fat-free, reduced- sodium chicken broth

one tablespoon tomato paste

Instructions:

�� Season the chicken with oregano, salt, black pepper, and cayenne pepper.� Heat a large saute pan coated with cooking spray over medium-high heat.� Add chicken and sear on one side for three minutes or until lightly browned.� Turn chicken over.� Top with bell peppers, lemon rind, and juice.

�� Cover, reduce heat, and simmer 15 minutes or until chicken is done.� Combine broth and tomato paste in a small bowl.� Stir tomato mixture into a pan; bring to bowl.� Serve pepper mixture with chicken.� Serve over rice or noodles.

Exchanges: �3 very lean meat, 1/2 fat, 1 vegetable�

Calories: 168, total fat: 3g, cholesterol: 68mg, sodium: 423mg, total carbohydrate: 8g, protein: 26g.

Grilled Fruit

Makes: eight servings

Serving Size: one skewer

Prep Time: 20 min

Ingredients:

1 pint strawberries, stemmed and halved

two small mangoes, peeled and cut into 1-inch chunks

16-once can pineapple chunks packed in juice, drained

two Granny Smith apples, peeled, cored, and sliced into eighths

eight bamboo skewers, soaked in warm water

two tablespoons honey

Instructions:

�� Prepare an indoor or outdoor grill.� Assemble kabobs by alternating strawberries, mango, pineapple, and apples on each skewer.� Brush all sides of kabobs with honey.� Grill over medium heat for six minutes, turning occasionally.�

Exchanges:� 2 fruit

Calories: 104, total fat: 0g, cholesterol: 0mg, sodium: 2mg, total carbohydrate: 27g, protein: 1g.

Cherry Tarts

Makes: 15 Servings

Serving Size: one tart

Prep Time: 10 min

Ingredients:

8 ounces light cream cheese

4 ounces fat-free cream cheese

one half cup fat-free sour cream

one egg

two egg whites

one tablespoon vanilla extract

15 reduced-fat vanilla wafers

one 21-once can light cherry pie topping

15 paper baking cups

Instructions:

�� Preheat oven to 350 degrees.� Combine cream cheeses, sour cream, egg, egg whites, and vanilla extract and beat until smooth.� Line muffin pan with paper baking cups and place one vanilla wafer in the bottom of each cup.� Fill each muffin cup with approximately 1/4 cup cream cheese mixture.

�� Place muffin pan in oven and bake 40- 45 minutes or until lightly golden brown.� Let cool and top each tart with one tablespoon cherry pie filling.�

Exchanges: one fat, one carbohydrate.

Calories: 106, total fat: 4g, cholesterol: 26mg, sodium: 139mg,

total carbohydrate: 13g, protein: 4 g.

��

-------------------------

NEW TALKING HOUSEHOLD THERMOSTAT

�� If you've ever struggled with the tiny, difficult-to-use settings on your furnace thermostat, you should check out the new Kelvin Talk-a-Therm.� It is a fully interactive talking household thermostat -- which means it talks to you (tells you the settings, so you don't have to strain to see them) and it has speech recognition capacity -- you can talk to it; programming it with your voice.� Just introduced, the Kelvin is marketed by a company named Action Talking Products, LLC, in partnership with the National Federation of the Blind.

�� With the fully programmable Talk-a-Therm, the homeowner can preset the temperature for specific times and specific days.� During days when heating is required, it can be preset to lower the temperature during evening hours and then raise it again in the morning.� It can also be preset to lower the temperature during hours or on days when the homeowner is away, at work or on vacation, for example, and to then automatically raise it again for an anticipated time or day of return.� Every button and function speaks, making it easier to program.

�� The Kelvin will also control your air conditioning, making it useful in summer as well as winter.� It will not, however, work with heat pumps.

�� Once the Kelvin has been programmed, temperature can be adjusted by voice commands, since it has built-in speech recognition.� After saying a "keyword" to activate the speech recognition function, all the user has to do is say "raise" for each degree up and "lower" for each degree down, and the thermostat will verbally announce the new setting.� The folks at ATP said it was necessary to use a "keyword" for activation, because if you didn't, and simply allowed the thermostat to function without the special activation command, you'd have a really hot poker game if the temperature went up every time someone hollered "I raise!"

�� The Kelvin is only marginally bigger than a conventional thermostat: 5.25 by 5.25 inches, 1.25 inches deep.� Like a conventional thermostat, it can be installed by any competent professional.

�� The Kelvin Talk-a-Therm can be ordered by mail, e-mail, on-line, or phone, at a price of $130 plus $11.95 for shipping and handling.� It is available from:� Materials Center, National Federation of the Blind, 1800 Johnson Street, Baltimore, MD 21230; telephone: (410) 659-9314; e-mail: [email protected]; website: www.nfb.org, or from: Action Talking Products (or just ATP), 200 Robbins Lane, Jericho, NY 11753; website: www.actiontalkingproducts.com��

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WHAT HAPPENED TO THE SUGARTRAC?

�� From the Editor:� I first met Richard Peters, inventor of the SugarTrac noninvasive glucose monitor, at the 2003 national conference of the American Association of Diabetes Educators, in Salt Lake City, Utah.� We discussed his new meter, and he told me before long LifeTrac Systems would be submitting it to the US Food and Drug Administration, the FDA, for marketing approval.�

�� During conversations with Mr. Peters after the AADE meeting, he told me it was their plan to incorporate voice output in the SugarTrac, with an on-off switch so people could use the voice or simply read the screen.� He said it didn't make sense to first build the SugarTrac and then equip it with voice output -- as it was very easy to provide a voice synthesizer right from the start.�

�� As conceived, the SugarTrac is a small, easy-to-use, non-invasive glucose monitor, about the size of a cell phone.� No skin is pricked; no blood is drawn.� A small clip fastens to the earlobe; a tiny wire connects to the meter.� The clip is re-usable; there are no test strips or lancets to buy.� And, as they describe, the meter is meant to talk.� It's meant to be inexpensive too, no more than $100 for the machine, and a quarterly (every three months) "recoding" expense, less than $50, for the earclip.��

�� We need something like this.� We've been waiting a long time.

�� LifeTrac, the corporation Mr. Peters and his financial backers set up to commercialize his invention, set up a toll-free number in Fort Myers, Florida, to handle inquiries about the SugarTrac.� Some time earlier this year, Mr. Peters told me he was sure they'd had approximately 10,000 calls about the meter.�

�� Early in May 2005, I found out this number had been disconnected.� I had the LifeTrac address, where Mr. Peters had been receiving the Voice for some time, physically checked.� The folks they'd hired to answer the phones had moved out; not a trace remained.� At the same time, the LifeTrac website had been taken down.

�� Several days later, the website (www.sugartrac.com) reappeared.� The only changes to the site were the deletion of any toll-free number or Florida address.� There were no new status reports on the meter.

� �� I was delighted to see the website come back up.� Although the information it contained was old, its reappearance suggested the meter was still being worked on ...

�� Around May 16, I tried contacting Mr. William Danton, president and CEO of Danton Enterprises, in Biddeford, Maine, whose organization specializes in business start-ups, and who holds the rights to the SugarTrac.� I reached him, but he told me he was late for a meeting, and that he had to run.� He thanked me for the call, and asked me to get back with him.�

�� I called the next day, but someone in the office told me he had left town, but would be back in several days.� He wasn't.� I called several more times, and every time was told, "he is out of town, and will be back on ..."�� There was always a specific date for his return -- and he was never there on that date.� The gentleman I spoke to said, "Mr. Danton had all kinds of calls to respond to, and had been traveling quite a bit."

�� I never heard from Mr. Danton.� I last tried on June 1, 2005.

�� The man I spoke to also said he'd "let Dick [Peters] know I'd called, when he checked in that day," but that he hadn't checked in yet.

�� I never heard from Mr. Peters, either.

�� Voice of the Diabetic reaches well over 350,000 readers.� I cannot understand why Mr. Danton wouldn't deem it important enough to telephone me with a status report on the SugarTrac.� Thousands of diabetics, blind and sighted, read the Voice, as do more than 19,000 health professionals.��

Contact:�

William Danton

President, Danton Enterprises

316 Main Street, 2nd floor

Biddeford, ME 04005

(207) 284-9046

Direct: (207) 282-0878

fax: (207) 286-2858

e-mail:� [email protected]

website:� www.sugartrac.com

----------------------------------

INHALED INSULINS ARE ON THE WAY

�� Pfizer, and its partner Sanofi-Aventis, have filed an application with the U.S. Food and Drug Administration (FDA) to market their inhaled insulin formula, Exubera, in the United States.� Exubera is a dry, powdered form of insulin, that is inhaled into the lungs via a special inhaler, and from there absorbed into the bloodstream.� Exubera, which was developed by Nektar Therapeutics, is intended for use by any insulin-using diabetic, type 1 or type 2.� The European Medicines Evaluation Agency is also reveiwing the drug, for possible licensing in the European Union.

�� Eli Lilly is also working on an inhaled insulin, the Lilly/Alkermes Inhaled Insulin System.� Currently in Phase II clinicals, Lilly researchers are tackling the problem of "duration of effect," the fact that inhaled medications tend to work, but "all-at-once," quickly and with a pronounced peak.� Per their reported data, outcomes are good; they are solving the problem, and achieving results similar to those from injectable insulin.

�� Canada-based Generex Biotechnology has published studies, carried out in Israel, of its Oral-Lyn insulin, detailing that formulation's success.� Oral-Lyn goes in the mouth, yes, but it is not, like the others, an "inhaled" insulin -- it is absorbed by the mucosa of the mouth, not the lungs.� Oral-Lyn is in clinicals in a number of locations, and, the company reports, doing well.�

�� None of these inhaled insulins are ready for market; all could go the distance and be approved.� Any, or all, on the other hand, could fail the FDA's safety tests.� They are all works-in-progress.�� Stay tuned, Voice of the Diabetic will keep you posted when it looks like the first one nears the finish line.� For now, it's a horserace, and they're all running strongly.�

�� 

-----------------------------------

DIABETES ACTION NETWORK ARTICLES BOOK

�� The National Federation of the Blind maintains an extensive literature collection, with free materials on many subjects available in a variety of formats.� The articles listed below make up one part of the collection, the "diabetes" category.� They are available, in large print or on 4-track audiocassette, in a single volume titled: Diabetes Action Network Articles, or singly, in large print.� The book is also available for viewing or download on our NFB Website:� www.nfb.org/danbook.htm.� Its content is regularly updated.�

�� Articles are:� "Arthritis and Diabetes:� A Common Association," "Blind Diabetics Can Draw Insulin Without Difficulty," "Can I Eat Sugar?," �Carbohydrate Counting and the Exchange List,� "Cardiovascular Health: Bypass May Be Better for Diabetics," "Check Your Hemoglobin A1c I.Q.," "Diabetic Eye Disease," "Diabetes Definitions: The $5 Words," "Diabetic Foot Pain," "Diabetic Peripheral Neuropathy," "Diabetics, Don't Give Up on Braille," "Diabetes, Neuropathy, and the Feet," "The Emotional Side, "Finger-Sticking Techniques,� "How I Went Blind ... And Then What," �Hypoglycemia � Low Blood Sugar," "Insulin Measurement Devices," �Insulin Types:� A Review," "Kidney Disease: Prevention, Dialysis, and Transplantation," �Male and Female Sexual Dysfunction," �Many Blind Diabetics Successfully Use Insulin Pumps,� "Oral Diabetes Medications Update," "Talking Blood Glucose Monitoring Systems," and "What Is Diabetes Mellitus?"�� Copies are free of charge.

�� The Diabetes Action Network Articles book, and its individual articles, can be downloaded from the NFB website:� www.nfb.org/diabetes/diabetesbook.htm

�� To order, or to request a complete NFB literature catalog, contact:� NFB Materials Center, 1800 Johnson Street, Baltimore, MD 21230; telephone:� (410) 659-9314. You may also order items by e-mail: [email protected]� The Materials Center is open 8:30 am to 5 pm, EST, weekdays.

---------------------------------

THE FACTS ABOUT A1C

includes chart, "How Blood Sugar Self-Testing Results may Compare With A1c test results"

�� Note: This information was provided by the American Association of Clinical Endocrinologists (AACE), whose headquarters is in Jacksonville, Florida.� To contact the AACE, telephone: (904) 353-7878; website: www.aace.com

What is the A1C test?

�� The HbA1c test, or �A1C� test, for short, is a blood sugar test that measures a person's average blood sugar levels over the previous two or three months.� It is often taken in a doctor�s office.� The A1C test is a complement to the daily blood sugar monitoring that people with type 2 diabetes take at home on their own.� The A1C test can be described as taking a semester exam versus a daily quiz.

Why is the A1C test important?

�� The A1C test can tell if blood sugar levels are close to� normal or too high.� It provides an indication of blood sugar control over the previous two- to three-month period.� The A1C test can help predict the risk of developing long-term, diabetes-related complications.� As such, it is important to set and meet A1C goals.� Together, A1C results and daily blood monitoring help physicians make adjustments to the management plan for a person with type 2 diabetes.

What is the target level for A1C?

�� The American Association of Clinical Endocrinologists (AACE) recommends people with type 2 diabetes reach an A1C goal of 6.5% or less.� Achieving this goal is important, since every 1% increase above 6% elevates the risk of diabetes-related complications such as stroke, heart attack and loss of limbs.� It is important, however, that people with type 2 diabetes speak with their doctor or other healthcare professional about setting their own personal A1C goal.

What if the A1C target is not being reached?

�� Depending on A1C levels, a doctor (such as an endocrinologist who specializes in diabetes care) or other healthcare professional may prescribe medicine(s) particularly when diet and exercise are not working adequately, to help manage type 2 diabetes.� A combination of drug therapies that work in different ways may be prescribed to help improve blood sugar control.

How often should A1C levels be tested?

�� AACE recommends people with type 2 diabetes take an A1C test at least quarterly.� A doctor may give the A1C test more or less frequently, depending on person�s circumstances, for example, if a person is above A1C target or undergoing a change in medication.

What is the difference between A1C levels and average blood sugar levels?

�� A1C measures long-term blood sugar control (over the previous two to three months), while a blood sugar test measures the levels of sugar in the blood only at the time of the test.� The attached chart shows how an average daily blood sugar number might compare to a two- to three-month A1C number.

--------------------------

WHY I'M IN THE NATIONAL FEDERATION OF THE BLIND

by Gail Bryant

includes photo of Gail Bryant

�� One of the reasons I choose to be a Federationist is this:� I was raised in a "school for the blind" environment where, as many of you know, you conformed whether you wanted to or not.� Mostly you got along, if you shut up and minded your manners.�

�� Being involved in the National Federation of the Blind has given me the opportunity and the privilege of meeting all kinds of blind people, from all over the world.� I have met very capable, very incapable, and very protected, sheltered blind people.� Many, through the Federation, have learned to emerge from their shells of isolation, and meet the challenges of life.�

�� I have learned different ways to do things � not like what I was taught.� And, I have learned that, despite what society thinks or says, it is respectable to be blind.�

�� Not all of us have an axe to grind � not all of us are radical militants who want to step on anyone and everyone's toes.� There is a time to fight and a time to be silent.� There is a time to stand up for what you believe, and a time to know when to lay down your weapons.� That is what being a �good" NFB'er has taught me...

---------------------------------

EDUCATION, EMPOWERMENT, AND THE INSULIN PUMP

by Ivy Fung, MS, OTR/L, CDE

�� My endocrinologist pleaded with me to switch to the insulin pump.� I'd been taking four injections a day, and she called that "a crude method of managing diabetes."� The thought of being attached to an object, 24 hours a day, did not appeal to me, but I trusted her with my well-being and finally took her advice.� I have not regretted it since.

�� I'm an Occupational Therapist and Certified Diabetes Educator.� I work at San Mateo County Medical Center, in San Mateo, California.� I've worked here for six years now.�

�� I was born in Hong Kong.� I've had type 1 diabetes 29 years.� I was 25 when I was diagnosed, two weeks after giving birth to my eldest daughter, Stephanie.� I have a younger daughter, Jacquelyn.�

�� When I was diagnosed with diabetes, I was not in the medical field, not a clinician, so I knew practically nothing about diabetes.� I would not say� that I had "gestational" diabetes, because it manifested after, not during, the pregnancy, and it left me insulin-dependent. (Editor's Note:� Most gestational diabetes, if it worsens, proceeds into type 2 diabetes, not type 1.)��

�� During the first week home from childbirth, I started manifesting the signs of diabetic ketoacidosis, DKA. My husband called the doctor, my GYN, and reported my symptoms.� I was very weak, and had trouble breathing.� My gynecologist prescribed Valium.��

�� I took the Valium, and, since I couldn't keep any food down, I was on a liquid diet of orange juice and dark vinegar steeped in sugar.� I did not eat the ritual Chinese "post-maternity cleansing" concoction:� hard boiled eggs, ginger, and pig's knuckle.

�� My DKA was "DKA-ing," to a definite degree, shooting sky-high.� My husband called the doctor back, and reported that my symptoms were getting worse, and finally, the GYN said to stop the Valium and take me to the Emergency Room.� I remember passing out in the car, on the way; I was in such misery.� Then I woke up in the ICU, where the attending physician immediately diagnosed type 1 diabetes.�

�� Upon discharge from the hospital, I started going to a reportedly reputable endocrinologist who treated my type 1 diabetes with a single shot of NPH per day.� I visited him every quarter; he did my fasting blood sugars, took my vitals. and did a gross visual check of my arms and legs.� My A1c, lipid panels, et al, were never monitored.� I remember being asked if I wanted to perform self-monitoring of blood glucose.� I said "No," and the subject was dropped.� I asked him about complications, and was given the impression they were inevitable: "We're all going to die someday."

�� In 1989, after 17 years with a major jeans maker, I was laid off from my job as a production/scheduling supervisor.� I'd come to this country from Hong Kong as only a high school graduate.� After going through an extensive career search, I started college at age 40, with the goal of becoming an occupational therapist.

�� It happened when I had to take a physical exam, for an occupational therapy aide job.� The tests included a random blood glucose reading, and mine was "off the charts."� My blood sugar was somewhere around 1000.� I went back to the doctor, who called it a "fluke."��

�� Through friends, I found a new endocrinologist, Dr. Sherna Madan.� She put me on a whole different self-management regime.� Then she took my A1c, and it was 11.1, very high.� She put me in the hospital, so she could get my numbers down and get my diabetes back in control.� She made a lot of changes.

�� She put me on four shots a day, where my earlier doctor had prescribed only one shot a day -- and she proposed I use the insulin pump.� I've been going to her for 12 years now.�

�� The insulin pump mimics the pancreas, in that it delivers insulin continuously to your body, 24 hours a day, seven days a week -- but it does not self-adjust, and it does not replace self-monitoring of blood glucose (SMBG).� In fact, one essential requirement for a pump user is that she has to be willing to test herself a minimum of four times a day, every day:� before each meal, and at bedtime.� Also, it is very important to test before and after exercise.

�� The pump is a sophisticated little machine about the size of a pager, weighing as little as 3 ounces, and can be worn externally on a belt, or hidden under the clothing.� Fast-acting insulin (Regular or Lispro/Humalog) is delivered to the body via a very fine infusion cannula, inserted subcutaneously into the abdomen. This infusion set has to be changed every three days, to minimize skin infection.�

�� To cover a 24-hour day, the user can program several "basal" rates of continuous insulin delivery, set to fit different needs at specific blocks of time.� I set mine to deliver 0.5 unit/hour during the early morning hours, to offset the rise in blood sugar known as the "Dawn Phenomenon."� I reduce it to 0.3 during the day, because I am most active, at work, and I need less insulin.� My current total basal rates add up to a total of 7.8 units a day, which can be adjusted at any time, as necessary.

�� In addition to basal rates, I also deliver "boluses,"� specific doses to cover a meal.� I do carbohydrate counting, to compute the size of these boluses, and use them to cover meals, snacks, and to adjust high glucose readings (there is a ratio based on an individual's height and weight).

�� Pump users generally use less insulin than those who inject with syringe or pen.� My daily dosage, for example, is about 22 units a day.� As pump users run a higher risk of hypoglycemia than "injectors" do, it is critical to regularly self-monitor blood glucose.� Also critical for pump users are cognitive skills, maturity, self-discipline, and dedication.

�� Insulin pumping is intricate, and many factors must be considered.� But, for all the work, it does give type 1 diabetics very fine control, and a lot more flexibility in their daily activities.� On rare occasions, a type 2 will be prescribed a pump, but only when a combination of oral medications and insulin injections proves insufficient.

�� In my work at the hospital, I often treat patients who have a "secondary diagnosis of diabetes."� Occupational therapists like me teach people with disabilities to return to their maximum level of independence, in self-care and all other activities of daily living.� This may, for example, include teaching a stroke patient in range of motion, strengthening, coordination, and functional use of the hemiplegic arm to do self-monitoring of blood glucose.� It may involve instruction in foot care with the use of equipment, perhaps compensating for visual deficiencies or decrease of sensation.� Activities of daily living may involve logging of meals, blood glucose readings, and stress management techniques, to name a few.

�� I am fortunate that my manager, Diane Prosser, supports my passion for diabetes education, and sees the relevance of incorporating it into my work as an occupational therapist, i.e., teaching people with disabilities to use their skills to reach their maximum level of function in self-care and activities of daily living.�

�� I feel so strongly about empowering patients through education.� To survive the demands of diabetes, diabetics need to strengthen both physically and emotionally.� Learning, acquiring new self-management skills, and then using them, helps; but emotional coping is strengthened when patients take more responsibility for their own well-being -- and education helps that.�

�� Diabetes care is a daily challenge.� It takes a lot of discipline and self-motivation.� There are some days when you feel like giving up, and there are some days when you're so happy to be healthy.� But on the days you feel like chucking it in, on those days, give yourself some slack.� I think the empowerment that comes from education is very important, and I think families play a big part in the health, support, and welfare of diabetics.� It makes such a big difference.

�� It can be a struggle.� Diabetics have told me they have days when "nothing works."� There are days when I, too, feel like throwing in the towel.� But I try not to be judgmental, or to use words like "cheat," for a departure from your meal plan.� In fact, many of the old rigid rules are now obsolete.� Diabetes educators are currently teaching people that it is allright to incorporate "sweets" into your daily diet, so long as they are accounted for in the meal plan.

�� Don't let diabetes control your life.� Fear comes from not knowing.� Knowledge is powerful.� The more you learn, the more control you gain over your own well-being.

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THE HEALING VALUE OF FUN

by David Spero, RN

�� I don�t exercise,� says my friend Alfred Gee, �I bargain hunt. I like to take the bus downtown and go to different stores. I compare prices and quality and have a great time, especially when I save some money. It takes hours, but I�m retired, so why not have some fun? By the time I get home, I�ve walked four or five miles. I�ve tricked myself into exercising.�

�� Not everyone shares Alfred�s idea of a good time. But we can all benefit from having more fun in our lives�and not just to help us exercise. Studies show that relaxing and enjoying ourselves on a regular basis can decrease stress, improve immune system function, decrease our perception of pain, improve our mood, and help our hearts beat more regularly. The fun prescription is the best you�ll ever get: there�s nothing to give up, nothing to monitor, and no fingersticks, needles, or drugs.

�� The healing power of fun and laughter is well supported in theory, but many of us don�t get enough of this medicine to test the theory for ourselves. Remember the parable of the ant and the grasshopper? The ant toiled endlessly all summer long, while the grasshopper goofed off. As a result, the ant had enough to eat over the winter, while the grasshopper starved. The fable never mentions the ant�s chronic back pain and high blood pressure. Our society strongly endorses the ant�s lifestyle: work, work, work. With legends of self-made men in our history books and phrases like �Time is money� in our vocabulary, Americans often view any nonproductive activity as a waste of time. Work is necessary and valuable, of course, but being a workaholic takes a considerable toll on our minds and bodies. We also need balance. Learning to take it easy from time to time will improve our health, quality of life, and probably our productivity as well.

Are we having fun yet?

�� What is fun, anyway, and how do we know when we�re having it? There�s no scientific definition, of course, and everyone has his own idea of what�s fun. Fun and laughter often go hand in hand, although you can have either one without the other. There are all types of laughter: polite, malicious, nervous. Scientists use the term �mirthful laughter� to indicate the kind of good-natured laughing we do when things strike us as funny or when we�re having a good time.

�� Fun can also be synonymous with play, pleasure, fascination, and joy. Having a good time usually means not taking ourselves or what we�re doing too seriously. At work, everything we do has a purpose, and the point is to produce or accomplish. In play, we do an activity for its own sake. We become absorbed in the game, puzzle, or movement, or in what we�re seeing and hearing. While we may also be trying to win a game or to learn something new, we enjoy the activity itself, as Alfred enjoys his bargain shopping.

�� Play often involves using our imagination and creativity. Have you ever seen comedians in an improv show find a dozen ways to use some simple prop to create unexpected effects? Silly, unusual, or incongruous sights or situations can often make us laugh and provide us with a lot of amusement. Of course, you don�t have to be in stitches to enjoy yourself. Taking simple pleasure in visual, sonic, or tactile beauty is another way of letting go and having fun.

A laughing matter

�� Some people claim that humor has actually cured them of serious and potentially fatal conditions. Norman Cousins jump-started the whole science of psychoneuroimmunology, or mind/body healing, with the famous example detailed in his book, Anatomy of an Illness as Perceived by the Patient. After returning from a stressful trip abroad, Cousins was diagnosed with ankylosing spondylitis, a chronic autoimmune disease. A form of arthritis, ankylosing spondylitis causes inflammation of the spine, pelvis, and many joints. Cousin�s doctors predicted a gloomy future. Facing this prognosis and dissatisfied with the quality of life and care in the hospital, Cousins checked himself into a hotel suite (at one-fourth the price of his hospital room!), where he had a film projector set up. He spent much of each day laughing himself silly over Marx Brothers movies and old episodes of Candid Camera. Within eight days, his pain subsided, and gradually, he recovered almost completely. Cousins believed that his positive attitude, good humor, and hope helped him to get the upper hand over his illness

�� Japanese researchers have also documented the healing power of humor and laughter in rheumatoid arthritis, another autoimmune inflammatory disease. Twenty-six people with the disorder listened to an hour of rakugo, traditional Japanese comic stories. As the participants' mood improved, their level of pain diminished. Moreover, their cortisol levels dropped, suggesting a reduction in stress; and their levels of interleukin-6 and interferongamma, indicators of inflammation, also fell. This means that the disease essentially �turned off� during the rakugo. It remained subdued for at least 12 hours afterward.

�� Laughter and good humor provide astonishing health benefits in other conditions, as well. Researchers led by� Lee Berk at Loma Linda University in California studied 48 people who had had a heart attack. Throughout the year-long study, all participants received standard cardiac care, but half of them were instructed to watch humor videos of their choice for 30 minutes each day. Both groups had lab tests and EKGs (a test of heart function) twice a month. At the end of the study, the humor group had lower blood pressure and fewer arrhythmias (irregular heartbeats) and required less cardiac medication. Moreover, while 10 people in the standard care group later had second heart attacks, only two in the humor group did.

�� More significant for people with diabetes, the humor group had greatly reduced levels of the stress hormones cortisol and epinephrine (adrenaline). Cortisol is associated with increased insulin resistance, while epinephrine stimulates the liver to release more glucose. While there are no specific studies yet on the effects of humor on diabetes, lowering stress is known to improve blood glucose control and provide other psychological and physical benefits.

The best medicine

�� However you do it, having fun benefits you on many levels. Here are a few of the ways good humor helps:

�� Laughter. Mirthful laughter is thought to have numerous health benefits. When we laugh heartily, we breathe deeply and exercise our chest muscles, momentarily raising our heart rate and improving blood flow to the heart. Laughter provides a gentle form of exercise that relaxes tense muscles and flexes less commonly used ones. It also reduces stress, boosts immune system function in several ways, and improves breathing by opening tight airways. It�s thought that laughter may even help cure snoring by improving the muscle tone of the palate and throat.

�� It�s interesting to ask how laughter evolved and why it is good for us. Some biologists think that laughter is our species� way of indicating that a situation isn�t serious, as in, �Yes, I fell, but I�m OK (ha, ha). Keep chasing that mammoth.� So laughter tells us that everything is all right and enables us to relax and keep on keeping on.

�� Social Connection. Sharing moments of fun can bring us closer to other people, and social support is powerful medicine. Many fun activities, such as games or excursions, involve partners or groups of people and provide opportunities to make new friends or keep up old relationships. If we like having fun, other people will like being around us.

�� Forgetting our troubles. Our problems and the world�s can wear us down. When problems pile up, our stress levels go up, too. Life seems bleak, and self-care starts to become more trouble than it�s worth. Working some pleasure into each day gives us a break from worries and problems and gives us more energy and clarity to deal with them.

�� Absorption in the moment. Fun can be a form of meditation. When we�re doing something we enjoy, we forget both the past and the future and pay attention to the moment. Living in the moment reduces stress and helps us appreciate life more. In India, Dr. Madan Kataria started a popular and now worldwide practice called yogic laughter, a form of meditation based on group laughing exercises. But we don�t need a formal spiritual practice or a laughter club to give full attention to what we�re actually doing. Whether we�re playing basketball or watching a sunset, getting lost in the moment is one of the healing dimensions of fun.

�� Enjoyable exercise. If people treated exercise as an opportunity to take pleasure in their bodies, play games, and try new activities, they would do a lot more of it. The attitude �no pain, no gain� usually leads within a few months to �no exercise.� So, consider finding physical activities you actually enjoy. You may be able to trick yourself into exercising, the way Alfred does.

�� New experiences. Most people tend to be scared of trying new things, because they are afraid they won�t be good at them. But when you try something just for the fun of it, it doesn�t matter how proficient you are. In fact, doing things you�re not good at can be a major source of enjoyment for many people. And new experiences are good for you. They make life seem more interesting and self-care more worthwhile.

Barriers to fun

�� If having fun is so, well, fun, why don�t adults do it more often? Many adults have learned that grown-ups don�t play. Having fun doesn�t clean the house, and it doesn�t pay the bills. Taking time for pleasurable activities may make us feel guilty or lazy. Maybe as children we never knew any adults who had fun, so we have no role models for light-hearted activity.

�� If you have difficulty loosening up for these or other reasons, you can overcome those barriers with an attitude adjustment. If you habitually think, �I�ve got so much to do and so little time,� try substituting a new thought, such as, �I�ve got time for the things that are important, and having some fun is important, too.� If doing something unproductive makes you think you�re lazy, consider it this way: �I do as much as I can, and that is all anyone can do.� Finally, think of having fun as part of your self-care, as valuable to your well-being as blood glucose monitoring.

�� Many adults are embarrassed to be caught having fun. We think people will laugh at us if we do something silly or if we�re not good at an activity; and we�re afraid that being laughed at will hurt. Perhaps we are perfectionists whose self-concept depends on being very good at everything we do. These attitudes can be a major source of stress affecting many parts of our life. If we are constantly judging our performance in life, we will find it next to impossible to let go and enjoy ourselves. Taking a chance and trying something new may be a healing experience, showing us that we don�t need to take ourselves so seriously, and that the sky will not fall if we make a mistake. Having someone we trust try an activity with us can give us more courage to take that risk.

�� Maybe it�s simply been a while since you did anything just for yourself, and you think you don�t know of any fun activities or where to find them. If this is your barrier to fun, seek out and spend time with humorous, active, friendly people who seem to enjoy themselves and know creative ways to have fun. Scan the papers for clubs, groups, and events that sound interesting to you. Zero in on the sounds of laughter and play�at a party, in the park, or even at the office�and become part of that world.

Making fun a way of life

�� Fun is really all around us; we just have to be open to it. Here are some ways to stimulate your fun-sensors and become more of a �player.�

�� Child�s play. Children are the grand masters of fun. They can spend hours blowing bubbles, rolling down a grassy hill, or playing a silly game. Interacting with children�or just watching them play�can scrape the rust off our fun circuits. If you have young relatives or neighbors, visit with them. Their parents will probably appreciate your help with supervising. If you don�t have children in your own family or social circle, stroll past the playground and just observe (from a respectful distance), or volunteer at a local school or day-care center.

�� Getting physical. Did you ever see a sporting event where sections of the crowd stopped watching the game to bat a beach ball around in the bleachers? Physical activities are very engaging, and you don�t have to be an athlete to enjoy them. Flying a kite, throwing darts, or tossing a balloon up and down are simple and easy ways to enjoy yourself. With a partner or group, there�s Frisbee, table tennis, shuffleboard, and a thousand others. These activities may be even more fun if you don�t keep score.

�� Mind games. Jigsaw or crossword puzzles can keep you busy for days, and they help keep your mind active and strong. Singing, drawing, playing a musical instrument, or making objects out of clay or Play-Doh exercise your creativity and can give you a sense of fulfillment. Writing can be stimulating for some. (For example, I�m having a lot of fun writing this right now.) Start a journal, write a letter, or try writing a funny sketch about yourself.

�� Funny stuff. A lot of people get paid to make us laugh, so why not take advantage of it? Read the comics or a joke book, watch a live comedy show, a funny video, or a TV sitcom that makes you laugh. Most of the scientific studies on the benefits of humor are based on this kind of passive entertainment, and it�s an easy way to get your daily dose of laughter.

�� Entertain your inner child. Think back to your childhood and all the games and activities you used to adore but no longer do. Some of these, like jumping on the bed, you probably gave up for good reason. But other activities, like miniature golf or swinging, may still bring you pleasure and remind you of happy times and how good it feels to play. How about buying a couple of cheap water pistols, or having a pillow fight?

�� Fun is a state of mind that gets easier with practice. It won�t happen all at once, but after a while, you may be able to make games out of activities that now seem like work. Maybe you�ll view a frosty window as a blank canvas for art, the way you did as a child. Or you might make musical instruments out of empty bottles and coffee cans. Life might gradually start to seem less like work and more like pleasure. And that change will make living well and managing diabetes easier.

�� David Spero is a nurse, health educator, and journalist. This article is adapted from his book, The Art of Getting Well: a Five-Step Plan for Maximizing Health When You have a Chronic Illness (Hunter House, 2002). Read more at

http://www.davidsperorn.com.�

��

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�� What follows is a graphic, titled "A Sermon Without Words."� On the first line, two mules are yoked together midway between two succulent bushes.� In the next line, each mule lunges toward a bush -- and they cancel each other's effort out.� Neither one feeds.� In the next line, they figure it out.� They pull together, and both are able to feed, first on the one bush, then on the other.� The moral is "cooperation."

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THE COURTESY RULES OF BLINDNESS

�� When you meet me, don't be ill at ease.� It will help us both if you remember these simple points of courtesy:

1.�� I'm an ordinary person, just blind.� You don't need to raise your voice or address me as if I were a child.� Don't ask my spouse what I want --"Cream in the coffee?"-- ask me.

2.�� If I am walking with you, don't grab my arm; let me take yours.� I'll keep a half-step behind, to anticipate curbs and steps.

3.�� I want to know who's in the room with me.� Speak when you enter.� Introduce me to the others.� Include children, and tell me if there's a cat or a dog.� Guide my hand to a chair.

4.�� The door to a room, a cabinet, or a car, left partially open, is a hazard to me.��

5.�� At dinner I will not have trouble with ordinary table skills.

6.�� Don't avoid words like "see."� I use them too.� I'm always glad to see you.

7.�� I don't want pity.� But don't talk about the "wonderful� compensations" of blindness.� My sense of smell, touch, or hearing did not improve when I became blind.� I rely on them more, and therefore may get more information through those senses than you do -- that's all.

8.�� If I'm your houseguest, show me the bathroom, closet, dresser,� window -- the light switch too.� I like to know whether the lights are on.

9.�� I'll discuss blindness with you if you're curious, but it's an old story to me.� I have as many other interests as you do.��

10.�� Don't think of me as just a blind person.� I'm a person who happens to be blind.

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�RESOURCE ROUNDUP

includes art:� hand taking book off shelf

�� Inclusion of materials in this publication is for information only; it does not imply endorsement of any product by the Diabetes Action Network of the NFB.�

��

To Our Readers

�� To hold down costs, both the Voice and many of our divisional mailings are sent via "bulk mail."� When we have your current address, this works very well; but when we don't, the Post Office throws the Voice away, or returns it to us with a hefty "postage due" attached.� They do NOT automatically forward bulk mail!

�� If you move, please let us know promptly.� If the Voice doesn't follow you to your new address, we may not have your new address.� Don't miss a single issue.

��

Diabetes Supplies

�� American Diabetic Supply, Inc., will ship your diabetes supplies to your door.� They handle all insurance claims and provide free delivery.� Folks with Medicare and/or private insurance (no HMOs) may receive supplies at no further cost.� For information, contact:� American Diabetic Supply, Inc., 400 S. Atlantic Ave., Suite 108, Ormond Beach, FL 32176; telephone: 1-800-453-9033, ext. 200; website: www.americandiabeticsupply.com

Easy Diabetic Cookbook

�� If you want to prepare healthy diabetic meals, but find most cookbooks just too complicated, you need Linda Coffee and Emily Cale's new and improved Diabetic 4 Ingredient Cookbook.� There are almost twice as many recipes as before, 350, in all food categories, with complete nutritional and exchange information, each one using four ingredients.� The book costs $19.95 (+$3.50 shipping), from:� Coffee and Cale, PO Box 2121, Kerrville, TX 78029; telephone: 1-800-757-0838; www.fouringredientcookbook.com

Newsline for the Blind

�� The National Federation of the Blind�s Newsline is an electronic publication of major daily newspapers, specifically tailored for blind and visually-impaired readers.�� Newsline electronically "reads" all of each day's edition, which is immediately made available via modem to the local distribution centers.� Users listen to the articles they choose, read to them in a synthesized voice.� The reader is free to jump between articles, sections, and publications, and to pick the speed of reading to suit their needs.� There is no subscription fee, and Newsline is not the Internet, so no computer is necessary to use it, just a touch-tone telephone.� Service is available to any person at least legally blind.� There is no charge.

�� For further information, contact: Newsline Network, National Federation of the Blind, 1800 Johnson Street, Baltimore, MD 21230; telephone: 1-888-882-1629.��

��

Test At Home

�� FlexSite Diagnostics makes home testing possible.� Imagine being able to get regular A1c tests, kidney microalbumin tests, and cholesterol tests, without having to get yourself to the doctor.� You can even get a veterinary A1c for your diabetic dog.�

�� For more information about their A1c At Home and other tests, telephone FlexSite Diagnostics at: 1-877-212-8378; or visit their website: www.alwaysincontrol.com

Participants Needed

�� "Feet First" is the name of a new study headquartered at the University of Missouri -- Columbia.� If you have diabetes (type 1 or type 2), are 50 years old or older, and have any numbness in your feet, you may be eligible to participate.� If you're in the middle Missouri area, or have the means to regularly travel there (Columbia, Missouri, is its only outlet),� this is one to check out. The study is already underway; but the team will continue adding new participants throughout 2005, until they fill their quota.� Remember:� It is through studies like these that we get our new and improved medications.� YOU are needed!

�� Contact:� Feet First Study, Dept. of Family and Community Medicine, University of Missouri, Columbia, MO 65211; telephone: 888-434-0017 or (573) 882-4993; fax: (573) 882-9096; e-mail:� [email protected]��

The Growth of Diabetes

�� The American Association of Clinical Endocrinologists reports there are 1.2 million new cases of diabetes diagnosed in the USA each year.� That equals a new diagnosis about every 25 seconds.� We all need to work to get those numbers down.

New Hypoglycemia Alarm

�� Diabetes brings with it the risk of hypoglycemia, low blood sugar.� Some of us need some help.� What many of us need is an alarm, a device to warn us we're going low, when we cannot tell for ourselves.� There is now such a device -- FDA approved.

Diabetes Sentry Products, from Bellingham, Washington, offers the Sleep Sentry, a wrist watch-sized device that sounds an audible warning whenever the wearer�s blood sugar drops too low.� Not a blood glucose monitor, this noninvasive device meters changes in body temperature and sweat consistent with hypoglycemia, and sounds a warning in time for you to take action.�� Completely noninvasive and continuous, the Sleep Sentry costs $399, shipping included, and may be ordered from:� Diabetes Sentry Products Inc., 1200 Dupont St., Suite #1D, Bellingham, WA 98225; telephone: 1-866-270-5675; website: www.diabetessentry.com

Diabetes Education By Phone

�� Sometimes you can't find a diabetes educator.� Maybe you live a long way away from the city, or maybe you're just not mobile enough to regularly get out to a clinic or office.� Now there's an alternative to doing without these important services.

�� Integrated Diabetes Services offers Remote Services, the opportunity to work, by phone, fax, or e-mail, with a certified diabetes educator, in exactly the same manner as you would face to face.� They can help you self-assess your diabetes control, refine your self-care goals, improve your self-management education, design customized record-keeping, and answer your questions.� They offer individual follow-up sessions, three-month retainer, or 12-month retainer, and, they even have a program for new insulin-pump users.� And you can do all this from wherever you are.� Now there's no excuse to put off contacting a diabetes educator.�� Contact:� Integrated Diabetes Services, 333 E. Lancaster Avenue, Wynnewood West Shopping Center, Suite 204, Wynnewood, PA 19016; telephone: 1-877-735-3648; fax: (610) 642-8046; e-mail: [email protected]; website: www.integrateddiabetes.com

It's Confidential!

�� The names, addresses, and phone numbers of subscribers to Voice of the Diabetic, and members of the Diabetes Action Network� of the National Federation of the Blind are confidential--we don't give your name out.� Many organizations make money selling lists of their customers/subscribers to others--which is where all those catalogs you never asked for come from.� We have never engaged in this practice, and never will.� We can keep a secret.

Virtual Insulin Pump

�� Smith's Medical, maker of the Deltec Cozmo insulin pump, offers a new teaching tool:� an interactive demonstration pump simulator, located on the web at:� www.CozMore.com.� You can "test drive" the pump, check out its programming options, and come to a better understanding of whether or not an insulin pump is right for you.

�

Diabetic Supplies On Line

�� Pharmacist Bryan Luna, Rph, offers diabetes supplies, including glucose monitors, online at www.diabeticsupplies.com .� This convenient website is simply laid out, and can be accessed in large print, too.� For those without the internet, telephone: 1-877-787-7543.� They will file your Medicare, Medicaid, and private insurance forms.� Free product catalog; 30-day money-back guarantee.�

�

Necrobiosis Lipoidica Diabeticorum

�� Necrobiosis lipoidica diabeticorum (NLD), also known as diabetic dermopathy, is a condition in which reddish spots appear on the skin, generally in the front of the lower legs, though they have been known in the back of the legs, the feet, the thighs, the hands and elsewhere. Little is known about the cause of NLD, but some non-diabetics also develop the condition, and these folks generally come from families and groups with strong genetic predisposition toward diabetes.�

�� The scaly, reddish-yellow patches of NLD have no known relationship to one's diabetes control or complications.� They are not signs of gangrene, nor indications of incipient neuropathy.� In fact, they don't appear to signal anything at all.� If your doctor tells you that's what you have (and you should get his/her opinion), put a skin-moisturizing ointment (lanolin, vaseline, etc.) on them and don't lose sleep over them. ��

Our E-mail Diabetes List

�� Our Diabetes Action Network now offers its own �listserv,�� [email protected].� Although its primary focus is on blindness and diabetes, any and all discussions concerning diabetes are welcome.� We welcome topics like: Diet, devices, healthcare, diabetes control, or how to improve the Voice of the Diabetic.� Remember, please do not give any direct medical advice, unless you are a medical professional.� Membership is free, and open to all.

�� There are two ways to sign up.� You can go to the following website: www.nfbnet.org/mailman.listinfo/diabetes-talk or you can sign up by e-mail, by sending a message to: [email protected] and putting �subscribe� in the subject line.

Medicare Coverage for Insulin Pumps

�� Medicare has covered insulin pumps since 1999, for diabetics who have a specific amount of C-peptide present in their blood.� However, the test to determine whether or not a type 1 diabetic met the criteria was not covered.� Effective March 2005, coverage has been changed; Medicare will now pay for the beta cell autoantibody test necessary to identify those who could most benefit from an insulin pump.� Some type 2 diabetics also use an insulin pump, and the new rules expand and standardize criteria for them, especially those with kidney disease.� For more information, contact the Center for Medicare and Medicaid Services (formerly HCFA) or your local Social Security office.

New Diabetes Resource List

�� The Diabetes Action Network of the National Federation of the Blind offers, free of charge, the 2004-2005 edition of Diabetes Resources:� Equipment, Services and Information, our comprehensive list of resources for diabetics.� Diabetes Resources is our compilation of companies and individuals offering products and/or information to help diabetics, especially those who are blind or are losing vision, self-manage their diabetes.� The list contains many subject categories, including:� Insulin Measurement Devices, Insulin Syringe Magnifiers, Insulin Injection Systems, Diabetic Foot Care, Blood Glucose Monitoring Systems, Insulin Pumps, Products for the Blind, Food and Diet, Literature and Information, Distributors of Diabetes Equipment and Supplies, and Medication Assistance.

�� Blind diabetics can and do accurately draw up insulin, monitor blood glucose, and perform the other tasks of independent self-management.� By using alternative techniques and products, they can continue being independent, and control their diabetes as efficiently as do their sighted peers.� Limitations are usually self-imposed -- often all that is needed to overcome negative thinking is simply to know where to go for information.

�� Diabetes Resources:� Equipment, Services, and Information (2004-2005 Edition)� is available in Braille, large print, and 2-track (music-speed) audiocassette.� The audiotape version is also available in Spanish.� There is no cost, in any format. You can access it on the NFB website: www.nfb.org/diabres

�� Please order from:� National Federation of the Blind, Materials Center, 1800 Johnson Street, Baltimore, MD 21230; telephone:� (410) 659-9314.� Note: the NFB Materials Center is open weekdays 8 am to 5:00 pm Eastern time.�

Window-Eyes Lease-Purchase

�� Technology can do great things.� With screen-reading software, like GW-Micro's Window-Eyes, a blind person can have full access to the working environment of a current PC computer loaded with Microsoft Windows.� This is a great thing, for pleasure and for employment.

�� But technology's marvels do not come cheap, and not everyone has the financial resources to obtain the latest programs when they're needed, which is, of course, "right now!"

�� GW Micro announces a lease-to-own program.� Instead of paying a big chunk up front, the user pays $50, gets a one-month "demo," and then renews each month for $100, until the program is paid off ($950 or $1150, depending on version chosen).� Full tech support is available, and the versions come with at least one free upgrade.� Once the program is paid for, it's yours.

�� For information, contact:� GW Micro; telephone (260) 489-3671; website: www.gwmicro.com/lto

Full Service Diabetes Supplier

�� Access Diabetic Supply promises free delivery, no paperwork, and free in-home training in the use of blood glucose testing devices.� Your private insurance is welcome, and they accept Medicare, too.� They offer free blood glucose monitors to folks who sign up.� Check them out on line:� www.diabeticsupply.com� or call:� 1-800-819-8738.

New Diabetic Exchange List

�� The �exchange system� has been around for years.� A generation of diabetics, blind and sighted, grew up using the American Diabetes Association�s (ADA) Exchange List for Meal Planning.� The National Federation of the Blind offered the ADA Exchange List in accessible format, Braille and 4-track audiocassette.

�� The ADA Exchange List has been revised and enlarged.� The current (2003) version now deals with carbohydrate counting, with fast foods, and with substitutions.� The meal planning lists have been reworked, and there are new categories.

�� For a copy of the Exchange List for Meal Planning, 2003,� in standard print, contact the ADA: telephone: 1-800-232-3472; website: www.diabetes.org/health/nutrition/exchangelist.jsp.� For a copy in alternative format (Braille, $10 or 4-track audiocassette, $2), contact the National Federation of the Blind, Materials Center, 1800 Johnson Street, Baltimore MD 21230; telephone: (410) 659-9314; website www.nfb.org

Healthy Cookbooks

�� JoAnna Lund writes healthy cookbooks.� They are simple, �common folks� recipes, and all contain both complete nutrient counts and diabetic exchanges.� There are three titles: Fast, Cheap, and Easy; Grandma Jo�s Soup Kettle; and Fresh From the Hearth.� Price is $10 each, or $25 for all three.� There is no shipping charge.� Contact: Healthy Exchanges, PO Box 80, DeWitt, IA 52742; telephone: 1-800-766-8961; website: www.healthyexchanges.com

New Hypothesis About Diabetes Origin

�� An article in the New York Times, May 17, 2005, relates the idea that diabetes might have its roots in the last Ice Age.� There were five great Ice Ages during the Pleistocene, the last epoch, and, during the last one, genetically modern humans were present in Northern Europe.� Could the sudden extreme cold be a factor in the development of type 1 diabetes?

�� Maybe.� Certain diseases are the result of genetic adaptations against other diseases; the best example being sickle-cell anemia, a double dose of a trait which in single-dose confers immunity against malaria.� Was type 1 a similar response to the cold environment?� And how would one test this hypothesis?

�� The researchers point out that type 1 is most prevalent among caucasians of Northern European ancestry.� They point out one needs only live long enough to reproduce -- but some of their ideas, while interesting, take us nowhere.� More research might someday yield a genetic "marker" for type 1 diabetes -- but until we have that marker, attempting to retrodict causality is a parlor exercise.

Diabetic Foot Products

�� The following products were specifically designed by Dr. Kenneth B. Rehm, DPM, to help treat diabetic conditions of the human foot.�

*�� DiabetiCream; $30 (plus S&H) for a 4-oz. tube.� Apply to clean, dry feet, to help alleviate dryness and cracking.� Use with massage will help circulation.

*�� ToeSoak; $20 each (plus S&H). Foot shampoo.

*�� ToesEase; (foot and toenail cleaner) $20 (plus S&H) for an 8-oz. supply.

�� All these products are available from:� The Diabetic Foot and Wound Treatment Center, 1529 Grand Avenue, Suite C, San Marcos, CA 92069; telephone: (760) 744-5226; website: www.thediabeticfoot.com

Voice Formats

�� Voice of the Diabetic is offered in two formats:� standard print, and 15/16 ips audiocassette, "talking book" speed.� Anyone who is currently receiving the Voice in print and having difficulty reading it, may receive it on cassette at no charge.� Voice tapes REQUIRE the special tape player available free to the legally blind from Regional Libraries for the Blind and Physically Handicapped, which can be obtained by telephoning the National Library Service at:� 1-800-424-8567.� Note:� Attempting to play Voice tapes (or any other tapes recorded for the Blind in NLS format) on a conventional music-speed tape player will fail, yielding only incomprehensible "chipmunk sounds."�

�� Periodically we receive requests for the Voice in Braille or large print.� It is not available in either of those formats at this time.�

�� All a subscriber needs to do, to switch from standard print to tape, or to receive both formats, free of charge, is contact us at the Voice of the Diabetic Editorial Office.

In The Next Issue

�� Next issue, Voice, Volume 20, No. 4, October 2005 edition, along with our usual columns and features, recipes, news releases, and medical/dietary advice, we will feature an interview with a lady who has had type 1 diabetes for 82 years.� Be sure to check out this incredible story.

�

Articles Needed

�� If you have diabetes, are a family member or friend of a diabetic, or a health professional with an interest in diabetes, we invite you to submit an article for publication in the Voice of the Diabetic.

�� Our philosophy regarding diabetes is positive.� Do you have an inspiring, enlightening story?� We, the Diabetes Action Network of the National Federation of the Blind, seek to show people they are not alone, and do have options, regardless of diabetic complications.� If you have experienced ramifications, others, who may be facing the same side-effects, could benefit from what you have to say.

�� Perhaps you have not experienced complications--your unique insight, coping strategies, and lifestyle can still inspire others.� Are you a relative, a friend, or a health professional?� More than 345,214 Voice readers could benefit from your story.

�� For information and article submission guidelines, contact: Voice of the Diabetic, 1412 I-70 Drive SW, Suite C, Columbia, MO 65203; telephone: (573) 875-8911.��

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SUBSCRIPTION/DONATION FORM

Voice of the Diabetic, your free diabetes magazine, is published four times a year by the Diabetes Action Network of the National Federation of the Blind.� If you want to start receiving it, please fill in the blanks below, and return it to us, by mail or fax.� Also, you may contact us directly, and tell us, by e-mail ([email protected]), by phone: (573) 875-8911, or by fax: (573) 875-8902.� Again, there is no charge.

[� ] PUT ME ON THE MAILING LIST.��

[� ] Make me a MEMBER of the Diabetes Action Network

[� ] I want my copies in STANDARD PRINT

[� ] I want my copies on 4-track audiocassette tape for the Blind (Requires "talking book" tape player available from NLS: 1-800-424-8567).

�� [� ] Send me BOTH tape and print

[� ] Send me EXTRA copies of the Voice to distribute in my community.� I can use _________ extra copies each issue, to help spread the word.

[� ] I want to donate $_______ to the National Federation of the Blind, to help pay for Voice of the Diabetic.� Each subscription costs us $20 a year.� Your support, any amount, is appreciated.

______________________________________________________

Name

______________________________________________________

Address

______________________________________________________

City�� State�� Zip��

__(_____)_____________________________________________

Telephone �� e-mail

RETURN THIS DOCUMENT TO:� Voice of the Diabetic, 1412 I-70 Drive SW, Suite C, Columbia, MO 65203; e-mail: [email protected]; website: www.nfb.org/voice.htm

V20#3 ��

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